soovaryit

[soovaryit]

The bodyodyodyody keeps the score (soz I stole this from Twitter)

I used to think talking about sex within a relationship was a sign that something is wrong. When I was younger I went from relationship to relationship feeling completely unable to have an open dialogue about what I liked and didn't like, how I felt about my body and sexuality and that got worse as my various chronic illnesses flared. But still - mentioning it, that I wasn't enjoying it or that it hurt or wasn't comfortable - felt like admitting defeat. Realistically, I was probably about 22 before I first actually enjoyed a sexual encounter. Considering I first had sex aged 16 (not writing 'lost my virginity' cos it's not a thing), that's a long time. I didn't dislike sex but I found it to be transactional: an exchange for the love or attention of my partner, a way to keep a relationship in equilibrium and a sort of performance, ending in satisfaction for whoever it was with. I remember telling partners that I found penetrative sex painful and seeing the hurt and disappointment on their faces. I internalised that and somewhere in my subconscious vowed to not mention it again, to just go through the motions with them and 'sort my head out' in my own time. I didn't want them to be upset. That sounds reeeeeeally depressing, and maybe it is, but at the time I can promise you it didn't feel that bad (which is depressing in itself, obviously). I just thought it was my role to play and I didn't want to make my boyfriend feel bad. This is, of course, very typical to the way in which women are socialised to please men and the chronic illness added another layer of shame. I didn't care about my own 'feeling bad' enough to acknowledge it because I was so afraid of the breakdown of that relationship and knowing that it would be because of me. Because I couldn't 'function' sexually the same way that I thought a lot of women could. I attached so much shame to sex that the only time I could let myself enjoy it after that was outside of relationships, when I was single and could be mildly drunk (or extremely drunk) first and didn't have to connect emotionally with that person. This often backfired of course - a lot of the time I didn't enjoy it, I would try and drunkenly explain how my condition affected me and shock horror whichever fuck boy from Tinder I was with that night didn't care. So the attitude became - if they don't care, I don't care and I won't mention it again. I even had sex with men that denied my pain or seemed to get a kick out of it but I was too caught up in whatever situation it was to dwell on it. My self esteem was at rock bottom and I became very detached from my body. Sex was more of a desperate desire for intimacy that I didn't know how to get otherwise. Holding in all that pain and the emotion attached to sex has not been good for me (unsurprisingly). I was so nervous for Psychosexual therapy because it meant actually working through that shame and those feelings that I had dodged for years. It meant admitting that sex and sexuality is incredibly complicated for everyone, in every situation and relationship, whether you talk about it or not. For the last few years I had definitely become more sex positive and understanding of what actually felt good to me and that was helped by having a partner that reciprocated that attitude and understood the many layers of difficulty I had in enjoying sex. For me, the unspoken became too much to bear and it was time for me to unpick the years of confusion and detachment. I'm still not ready to speak about all of it and I know that's because I have conditioned myself to 'not mention it'. I still have waves of shame when I don't believe that I deserve joyous, painless sex but the past few sessions have allowed me to start unpicking the mess that accumulated through years of shame and secrecy about it. Even with the most loving and supportive partners, sexual and medical trauma is something that I needed professional help with. Now I can understand that I've been brave to seek this out and that it's not unmentionable, because nothing should be.

[soovaryit]

Let's talk about sex baby (and endo)

I've touched on my sex life with endo when I was single but not when in a relationship. Navigating a regular sexual relationship with endo is really really hard to talk about. So hard that I just thought - fuck it I'm gonna write a blog about it - but then just stared at my laptop for about ten minutes.

The first thing that comes to my mind is - we don't talk enough about sex and endo. People throw around the odd joke about their partner not getting any anymore or giving up on sex entirely but rarely do we get down to the details and I find myself looking at people and wondering how they maintain a sexual relationship. I want to ask them how often they have sex, how much it hurts, whether their partner understands or whether it causes arguments. Whether they feel the same shame and sadness at losing their sexual identity as I do and how they handle that. But honestly I am too scared so instead I'll just blurt out how I feel about it and hope others feel encouraged to do the same.

The most difficult thing to get my head around when it comes to endo and sex is that even in the context of a loving relationship it feels traumatic because it hurts. It doesn't just hurt in the moment, it hurts for hours and days and interrupts your life. Regardless of how turned on you are at the time, once it starts to feel like A. Having sex with a cheese grater on fire or B. Like you've been stabbed in all your internal organs, the desire stops and anxiety and frustration take over. Sex hurts physically and it hurts the feelings of you and your partner and it will undoubtedly impact your relationship.

Occasionally people like to 'helpfully' tell me that I don't have to have penetrative sex just because I'm in a heterosexual relationship (really people say this a lot), to which I say 'yes, thank you, I am aware' whilst wanting to say 'please don't say this to anyone else ever it's patronising and irritating and presumptuous'. Because although a lot of conversation centers around being penetrated, I honestly dont believe being in a non heterosexual relationship makes endo and sex any easier. It's deeper than the physical, it damages your connection with your body, your libido and unless your partner also suffers with endo, it isolates you from them and makes you feel misunderstood.

In terms of feeling sexy or aroused it is tremendously difficult - I'm in pain 90% of the time and the other 10% I'm asleep. I feel bloated, fatigued and depressed - not the recipe for a wild sexual encounter. I'm starting Psychosexual therapy this year and hoping it will have a positive impact along with my surgery but endo and sex is a clusterfuck that might just be impossible to figure out and that's ok as long as we keep talking about it. So if you want to talk I'm here, slide into my DMs.

[soovaryit]

Happy endo-versary to me! I hope you enjoyed the disturbing image above.

At 27, I've had endo for ten years. And here I am to impart my infinite wisdom unto you all. Not really but I will tell you why I'm back at square one, waiting for a referral to gynae and I could feel shit but I don't.

And here's why! Actually, there's lots of reasons why. The first is that I'm getting better at accepting the cyclical nature of chronic illness (and life in general). There's a start but no known end and that is uncomfortable to sit with. Knowing that this will be with you for the rest of your life, the uncertainty around how bad it will get and what aspects of your life it will effect is daunting to the say the least, but what I hold onto is the fact that I have handled it before and I can handle it again. And maybe I'll handle it terribly! Who cares, it's hard. It will get worse again and it will get better again. It is near impossible for people who don't have chronic or reccurent illnesses to understand the immense strength and vulnerability that comes with dealing with the same shit over and over and over. It's soul crushing at times, but I've learned that you can literally always rebuild yourself. You might not the same but who says that's a bad thing? Probably only you and the unrealistic expectations you set yourself - be soft with yourself and give in to being a sick lil thing sometimes.

These are my good day mantras though. If you know me even vaguely you will know that I'm just not that optimistic on a daily basis and positivity culture makes me rage. I do a lot of raging. But on my absolute worse days, what gets me through is the thought that my story can be valuable to someone. My experience can help others, practically and emotionally, and the reason I'm so sure of that is because the stories, advice and the sense of solidarity I get from other chronically ill bbz is what keeps me going. I often write about the negatives of this stupid, confusing, life ruining, ridiculous disease and I am well within my right to, but it's helped me discover strength that I didn't know I had ten years ago and has, ultimately, shaped who I am. And I like who I am, so that's nice.

When I think back to the scared 18 yr old whose world had been turned upside down by pain and humiliating symptoms and investigations, I realise how much I could've used someone like me (future me, are you still with me?🤔) to say YOU'RE DOING GREAT HUN. Tell your bf sex hurts and your back hurts and your bowels have turned on you and you've never seen so much blood in your knickers and you can't stop crying and if he doesn't wanna hear it - dump him cos you don't have to have the extra burden of a partner who doesn't understand or doesn't want to.

After ten years I can truly say I carry very little shame around my bodily functions (or malfunctions) and I think that is remarkable progress. We've had period positivity, the wonders of Livia, Mooncups come back from the 1900's (but much prettier), period poverty schemes, trans men like the amazing @iamkej speak out about how periods are far too gendered and we've had REAL RED BLOOD IN A PERIOD ADVERT. I'm sounding like a real liberal feminist here but sometimes you have to appreciate the small victories. Although at times the grief surrounding this illness overwhelms me, things like this help me imagine the next ten years and give me a moment of hope, and anyone who has experienced the lows of chronic illness will know how necessary those moments are to survive this.

[soovaryit]

Social media helps many with the isolation of chronic illness – why are we made to feel guilty for using it?

I can say with total confidence that the internet, in general, is where I get the most knowledge and reassurance about my own illnesses. Not doctors, or medical books, or (as much as I adore them and they help hugely) friends and family. That makes me feel incredibly lucky to be able to access it quickly and easily pretty much anywhere at any time. It also makes me resent the ‘social media’ addiction rhetoric that has been doing the rounds for a few years now. Not doubting for a second that social media addiction is real and difficult for those who suffer, these articles and ‘self-help course’ advertisements seem to target any and all users, laying on the guilt for those who are active on sites like Facebook, Instagram and Twitter as if just existing on them is a problem. 

There’s also a very obvious social stigma. People around me often say ‘Wow, you’re into Instagram’ as if it implies some kind of narcissism that I have to argue my way out of or be ashamed of. Shame and shaming others is a big part of society, one that is much easier to internalise and take out on others than it is to reject and I can’t say I’m not part of that. But as someone who is chronically ill and not always able to function in real life social situations, social media has saved me from loneliness and sadness time and time again. We’re not supposed to celebrate the internet anymore, we’re supposed to think of it as this horrible place filled with trolls and cyberbullying and data stealing. And it is all of those things. But it’s also a place where beautiful, solidarity filled movements and safe spaces begin and flourish and I’m endlessly grateful for that. When I set up this page I received so many messages and comments about how just hearing the honest thoughts of someone with chronic illnesses helped others feel validated and that is so important in a world where loneliness and lack of community is one of the biggest detriments to wellbeing that we face.

I know that it can be a terrible, scary place for those with mental illnesses and I really do appreciate that. It can be full of triggering content and it can even contribute to feelings of loneliness on some level. But if you do want to be a social media user, my advice to you is to curate your own experience. Follow pages filled with hope, validation, advice and love. Follow movements like the @AntiDietRiotClub who promote body acceptance and positivity, @MakeDaisyChains, an occupational therapist who is kind and intuitive and artistically talented and @TheMighty, a platform for chronically ill peoples shared experiences. Follow @NoWhiteSaviours, @TheSlumflower, @kai_isaiah_jamal and @Femme4memes_ whose messages and talents urgently need to be heard and shared. Follow @Tofupupper for the sheer hilarity and cuteness. 

 You can make your own assumptions on me based on this blog (here’s where my defensiveness rears it passive aggressive head). You can think aww, how sad that these accounts are a number one of source of comfort to this person, they must be lacking something important in their life. I’m not so sure though. I have a very full ‘real’ life too, although that's beside the point. Even the busiest, most popular people are not exempt from feeling isolated and that’s important to remember. It’s a feeling, and one that chronic illness exacerbates by its very nature. If we talked about feeling lonely more, maybe it wouldn’t feel so all-consuming sometimes.

Other than to plug my favourite Instagrammers, I’m not entirely sure what the point of this blog was. Ultimately it was to tell you not be ashamed of waking up and scrolling through your phone. Not to be ashamed of needing social media to feel validated or heard or seen. It’s not real life and it’s not a replacement but it’s something that can be endlessly helpful once you see the value (and shut out the haters).

Happy World Mental Health Day and I hope you’re all surviving and/or thriving x

[soovaryit]

So it’s the second anniversary of my endo diagnosis (woooo), and I thought I’d share my experience of the diagnostic laparoscopy. Obviously, this is (usually) straightforward day surgery and nothing to be concerned about at all, but undoubtedly you have your reservations about what the experience and end result will be like. This will differ drastically for everyone, for some it will be a short and simple procedure and others there may be complications or the need for surgeons to make bigger incisions. I speak to a lot of people who think they may have endo but are worried about the lap and diagnostic process and my god I don’t blame you. But regardless of the struggle, I’m glad I pushed for a diagnosis and am (hopefully) on the path to healing. I know that people are worried about scarring, anaesthesia, pain and the recovery period and unfortunately, I can’t predict what it will be like but I can tell you it will be worth it in the end and that it is a (slightly scary) step forward.

In the scheme of things, I am a total endo amateur, having had only one lap and chosen to stick with the less drastic options of multiple hormonal contraceptives as I am lucky that it is not too severe. I can’t fathom the strength of those who have to go through multiple laps a year, as well as much more serious surgeries to reconstruct and remove organs that have been affected by endo. You are true warriors and I hope so much that you continue healing <3 I was initially very excited for my lap, although probably naïve to feel that way. I didn’t know much about the disease yet and assumed that they’d be able to remove it all, leaving me pain-free, with a Mirena coil to prevent further growth (as propositioned by my equally naïve GP). Obviously, it is rarely that simple. Getting to the point of the lap was emotionally draining, to say the least, but once I’d convinced multiple doctors that I could barely function because of the pain, I was booked in with 2 months wait. This is when I started to read stories like this, personal experiences of the operation and diagnosis process and it helped a lot. Some were reassuring, some worried me but ultimately I felt a sense of solidarity no matter what the outcome and still felt positive about the procedure. Unfortunately, my consultant, a gynaecologist with no special interest or education in endo was absolute shite*. In my two appointments before the procedure, he was fairly dismissive and not convinced that it would be endometriosis. This did not exactly fill me with confidence but changing doctors would be a long and arduous process and I decided this was the best thing at the time. The anaesthesia, which I was anxious about having not been put under since I was much younger, was absolutely fine. Anaesthesiologists are amazing at keeping you calm and I can barely recall being in the room at any point, let alone falling asleep. When I woke up I felt EXTREMELY emotional and ultimately pissed off. Everyone will have different reactions to anaesthesia and mine have always been volatile so it wasn’t really a surprise but basically everyone will be super nice to you.

The consultant came to see and his first words were ‘I have some bad news’.  I instantly burst into tears (OBVIOUSLY) and he started laughing, revealing that he had had to remove my belly button piercing before making the incision. This was not a funny joke and my parents called him out on it which I am eternally grateful for. He then went on to tell me that he was SURPRISED that I did, in fact, have endometriosis (I think I get angrier every time I think about how he handled this scenario). He told me that it had been active for around 6 years and he could see that the mega dose of hormones I was given in the months leading up to the op had healed the majority of it (he said a good thing! Yay!). He told me I still had one active patch that had grown on a blood vessel and could not be removed, ever. My heart sunk even though overall it had given me the validation that I wasn’t making up the 7 years of pain I experienced. Knowing that I had a patch that may not heal meant I would still be living with the pain and that was shitty to hear. He immediately told me his action plan which included ‘shutting down’ my ovaries for up to a year – inducing menopause. He did not give me any further information or a different choice. Ultimately, my choice treatment came from brilliant sources on the internet **and not a qualified doctor, which speaks volumes for how much knowledge many general gyanes actually have about diseases such as endo.

The next few days were very difficult emotionally and physically. I had the best possible support network around me but I felt extremely isolated couldn’t stop replaying the last 7 years of pain in my head and questioning why I never acted on getting a diagnosis sooner. I wondered how much pain I could have saved myself. I wondered if previous relationships would have worked out if I hadn’t been struggling with the burden of this disease and all the emotional shit that goes along with it. The pain, ironically, was similar to a super awful endo episode but stitches etc and the insertion of the coil made it more uncomfortable (I bought myself a latex skirt with the intention of wearing a week later to cheer me up – wrong decision. Ow.). There was also weird crampy shoulder pain that I read about due to the gas inserted into your abdomen during the surgery, that passed within a couple of days. The physical side was easy enough to bear. I had put up with varying levels of pain for 16 years which gives you a pretty high pain threshold. The emotional side of it was completely unexpected and really knocked me back. This is the part that they are seriously lacking in in medical situations. I was discharged that day with a follow-up appointment in a month’s time, the doctors words of ‘shutting my ovaries down’ ringing in my ears and I felt completely unsatisfied and terrified for the future. I knew I couldn’t live with that much pain anymore and so worried that it would never get better. When you have a lifelong condition like endo it is so hard to feel certainty and optimism about the future when you don’t know what your body might do next. It took over a year for the Mirena coil to have an impact on the pain which is pretty shitty and I’m not sure it ever would have worked for me alone despite doctors claiming its a ‘cure’. Luckily, I then found a wonderful doctor who prescribed me Cerelle, a progesterone only pill to boost my progesterone levels in an attempt to ease the pain. I also began therapy and a year’s course of Sertraline as my mood was (understandably) in the gutter.

It was at this point I started to unpick the negative and self-damaging thought processes I was having around the disease. I thought that it was my fault. I thought that I should have tried to get it diagnosed sooner. I felt like a burden to everyone. I felt like a lesser human because sometimes I couldn’t do ‘normal’ things like go to work or cook for myself or get out of bed. As I’m sure you’ve realised these are profoundly wrong, and if you feel yourself agreeing with those statements, it’s vital you seek some support and deconstruct the way you relate to your endo. To anyone facing the uncertainty of an diagnosis, my advice to you is to try and prepare emotionally. Refer yourself for counselling because anyone with a chronic condition NEEDS to talk about it, regularly, openly and without shame. It is essential for your mental health. If this isn’t an option for you, you can also speak to online counsellors or even get support from the wonderful people at Endometriosis UK (via helplines and support groups). Basically, it’s ok to admit that you’re scared, its ok to not feel positive and it’s understandable that those feelings are hard to come to terms with.

The actual diagnosis is hard to swallow but once it is on your medical records some things get easier. You have proof to show your employers, schools and universities, access to more/stronger pain meds and at least some explanation for the pain you’ve experienced. It’s beyond ridiculous that we live in a world where pain isn’t taking seriously until the point of diagnosis but that’s something that won’t change quickly and once your diagnosis has been confirmed you can look at the ways in which you can be supported. Two years on my pain has improved to the point where sometimes I can’t remember what a bad day feels like. That in itself is an incredible feat to me and somewhere I never thought I would be. Flare-ups are still hard and take it out of me but they are less frequent. I still talk about endo and my feelings about it as much as possible to cope with the bad days and to remind myself that that it’s still something I’ll have to deal with for life and constanly develop new coping mechanisms for. Remember that there is no shame in anything that you feel around your body or your condition and your emotions are powerful and completely valid.  

*UK people – for doctors who are not complete shite make sure you have a look at your nearest accredited endometriosis centre here

**Brilliant sources = mainly Endometriosis UK who are absolutely amazingly informative and supportive but also The Mighty  (catch one of my articles on the most read page oOoOoOoh) 

[soovaryit]

The fact is New Years is kind of shit. It's a weird anxious time full of forced reflection and the pressure to reinvent yourself or your life when maybe you're pretty damn great anyway but no one will give you a chance to realise.

Questions like 'Have you had a good year?! What have you achieved?! What are your New Years resolutions?!' Are thrown around by just about everyone along with the 'New year, new me!!!' bullshit dominating social media.

To be clear I'm not in any way shitting on self-improvement and if New Years prompts you to make positive changes - cool! I just don't like or agree with the pressure it can often put on people to make superficial changes in their life that might provoke more anxiety than do them any good.

For years and years, I had the most emotionally depleting and horrendous New Years and it took me a while to realise, but it came from this weird pressure to analyse your life and life choices. It's a perfect time for anxiety to manifest in socially awkward ways and make you doubt every aspect of your life. During those years, something different would be on my mind each time and would leave me completely unable to enjoy myself knowing that I was going into this 'new year' as a 'new me' being unsure of myself and my situation.

At least 3/4 years out of the 7 were wobbles about the (long-term) relationships I was in. Maybe a good thing considering I'm not with them now but at the time it caused a lot of stress for all involved. Maybe I'm deflecting blame but I distinctly remember my anxiety levels being through the roof and (obviously) not helped by alcohol, large-scale social situations and the expectation to have the best night ever!!1

The other years it was my job, the people around me, my maturity level, my looks, constant comparisons to what other people had done this year and where they were at in their lives. It left me consistently insecure and unable to enjoy it until the year I gave the fuck up. I think it's important to remember that new year doesn't have to mean anything to you or have any significance in your life. It doesn't erase the past, it doesn't call for a new or better version of yourself so please don't worry.

In reference to chronically ill babes, I know how hard it can be to look forward to the future or even imagine it sometimes when you're at a low or your pain is at its worst. And if it stresses you out you don't have to plan ahead or shape your future - there is nothing wrong with getting by a day at a time and I applaud you for it.

As I said earlier, there's nothing wrong with self-improvement and self-reflection is very important so if you do fancy doing some, there are more positive ways to think about changes you'd like to make or the place that you're at. Thinking about the positive changes or difficulties you might have overcome or are still working hard to overcome in the last year can be useful to think about rather than concentrating on your ‘flaws’ and how to magically fix them because its a ‘new start’ (and the coldest, saddest month of the year). 

I had a tough year but I started this blog and that's enough for me to feel really proud of myself (look out for an overly emotional post about it soon). You don't have to be doing things like buying houses or getting engaged or having babies or getting promoted or getting richer to be successful even though society would have you think so.

You are worthy no matter what you weigh, what job you do, how often you go to the gym, what you eat, what you wear, how ‘healthy’ you are, how green your smoothies are or how toned your butt is. You are doing ok and you will be ok. Keep doing you and if like me, New Years fills you with a certain dread do EXACTLY what makes you feel comfortable (and if that's getting drunk and ranting about New Years that's just fine).

[soovaryit]

I have been RAGING at my body as of late. As I’m sure other chronic pain and illness suffers will understand, I dramatically switch between the inner monologues of ‘I love my body! I’m going to be kind to it and fill it with nutrition and goodness!!’ to ‘I want to forget that I have a body, eat junk food and be drunk 99% of the time’.

This is all tied up in mental health and pain levels of course, but it can often be a reaction to the way in which others treat your pain. I’d love to pretend I’m positive and level-headed enough to not let peoples actions affect my personal outlook but nope. I’m a human being and a fragile one at that and every negative interaction I have around my illness feeds into a negative view of myself. Shout out to my therapist for that line, thanks Lyndz. Today I want to vent about common misperceptions and assumptions around endometriosis and chronic pain in general because they fuck me off and I’d rather address a general audience than have to explain this to individuals that I encounter. Maybe I should just walk around wearing a t-shirt with these on. It would have to be a very big t-shirt. Anyway.

First up – let’s tackle the big one. That endometriosis is a ‘women’s problem’. Problematic on several levels. First of all, endo affects 1/10 people with a reproductive system. This does not mean that they identify as female. They could be trans, non-binary and/or not use she/her pronouns. It’s exclusionary to adopt this kind of universal female rhetoric around the disease. I am guilty of this too but it would be nice to see a shift in the gendered language around endo that doesn’t exclude anyone who isn’t cis or female-identifying. The second way it is problematic is that society doesn’t care about ‘women’s’ issues. The more it is labelled as such the less it is thought of as a HUMAN disease that affects HUMANS. Please, lets start making this a human issue. Yes, it’s ‘taboo’ because it’s about periods and ovaries and all those yucky things that even modern medicine doesn’t want to acknowledge. But imagine if this wasn’t a gendered disease. I can guarantee you there would be extensive research and treatment on a condition that can glue your organs to one another and leave you with trapped internal bleeding and scars all over the inside and outside of your body. Not to mention ruin your mental health and fertility. Which brings me to…

All endometriosis sufferers want babies and that is their number one concern in the world! Who cares about your health and sanity when our sole purpose is to breed!! (I really hope you’re getting my sarcasm here).  It is an undisputed fact that during your journey with endo, (generally male) doctors will comment on your ability to have children without asking. This has even made me, a person who would like children, uncomfortable as it’s often information given to you based on the fact that you have the capability to produce a child, never mind if you have asked about fertility or stated that you want children. It is an irritating assumption that many doctors will offer you as a ‘cure’ when it absolutely isn’t. It’s misinformed, misogynistic bullshit that could be ended by the simple question of ‘are you concerned about your fertility?’ before launching into said bullshit. It also prevents doctors from performing hysterectomies to younger women as there is a ludicrous assumption that they will change their mind later in life and thus any agency around their body is taken away based on one doctor's opinion. I'm sure this is different country to country but in the NHS it is notoriously difficult. I was left with very little information after my lap other than ‘it hasn’t affected your fertility’. Yay for me but will there be any less pain? Who knows! Better crack on and get myself pregnant with my non-existent partner and stop hassling poor doctors over my quality of life. *

Number three is my fave go-to criticism from ‘healthy/able-bodied’ people (I find both of those words irritating but never know what else to say). That raising awareness for chronic pain is attention seeking or asking for a pity party. I think I am safe in saying that literally no one with a disability of any kind wants your pity. I can only speak for myself here but phrases like ‘you poor thing’ and ‘how do you cope?’ ignite a certain fury in me, especially when accompanied by a head tilt and simpering voice. It makes me feel pathetic. It makes me feel like you think I am pathetic, which could not be further from the truth. When I write blogs and share photos of my experiences with pain it is because I want to show people the reality of it. I want to end the misconception that any of my conditions are something to be hidden or ashamed of because that is how society keeps chronically ill people down. I want you to recognise the strength that it takes to live with pain every day and I want you to feel the frustration that suffers feel when they are not taken seriously or believed. Is it attention seeking? Yes. I want everyone’s attention when I explain how overlooked endometriosis and chronic pain are and how medicine is steeped in gender inequality and a disregard for complicated conditions. So there.

And I’ll finish with.. you’re just a hypochondriac! Okay let’s go there. In what world would any human being relish the idea of going to doctors and hospital appointments that cost them money and valuable time, only for their time to usually be wasted by medical professionals that don’t understand or have much of an interest in helping you?** Why would ANYONE want to spend their lives in bed feeling isolated and alone and depressed and waiting to feel well again when they’re not sure they will ever feel well again? Why would I want to spend my time making up pain and illnesses when I could, ooh I don’t know, be making the most of the degree I’m paying £51,000+ for? Or doing normal 25-year-old things like enjoying dating, going on holidays, working? Everything I do has to be a careful calculation of how bad I will feel after and it is exhausting. Some days I don’t want to step foot in my bedroom because it reminds me of miserable, seemingly never-ending bouts of pain and depression/anxiety. I would like to be a ‘healthy person’, whatever is that is but I will loudly shout about every condition that holds me back because we live in a world that doesn’t value people with long-term health problems. So I hope I have got your attention, but I don’t want your sympathy. I want your empathy and understanding. And honestly, I hope people do feel an element of discomfort when they read posts like this because chronic illness sufferers sure as hell don’t feel comfortable ourselves and I am happy for the world to know about it. Now a couple of disclaimers bcos that was a big ol’ rant and some things need to be made clear.

*Did not want this rant to discount the horrendous struggles of infertility because that is an unimaginably awful thing for people to go through and solidarity with you <3 

**There are also lovely, lovely caring medical professionals in the sea of incompetent ones like my doctor who is aptly named Dr.Peacock because he is a beautiful, understanding creature and please keep trying until you find one, you will find one.

[soovaryit]

Starting this on a somewhat depressing note, chronic illness fucks you up in ways you don’t even realise.

Every time I see a new therapist, I learn a new way in which pain and ill health have impacted my mental health, defence mechanisms and, to an extent, personality. This is why it is so important that conditions like endometriosis are treated as both physical and mental conditions. Your body and mind are indistinguishable from each other and what affects one, affects the other. This sounds mega obvious I know, but you’d be surprised by how many people (medical professionals included) overlook that. The NHS (to my knowledge and in my experience) treats physical illness and mental illness separately and distinctly, with no specific service or further support when the two are painfully interconnected. I’ve accessed just about every therapeutic service available to me and whether its pain management or talking therapy, neither can quite get a grip on the combination of the two and how they affect each other. It’s disheartening. I know that no amount of talking therapy will make my physical pain go away and no amount of medical treatment can really treat the trauma of almost 20 years of episodes of pain. But here I go waaayyy off track on a post that was meant to be about relationships! Also if you DO know of any services that consider how mental and physical conditions interact please HMU.

So. I’ve recently been undergoing IPT (Interpersonal therapy) which is quite unlike any talking therapy I’d done before. Honestly, I was shit scared because it focuses on conflict in relationships in relation to depression, which I knew would bring up some painful feelings. It has been useful to an extent and I genuinely would recommend it to anyone who feels their intimate relationships suffer as a result of chronic illness and the chronic low mood/anxiety that comes with it (UK people – contact your local IAPT to get this therapy).  However, it is very focused on mental health and we don’t go too deep into the pain issues, which is difficult as the more I talk about it, the more I realise how the pain and trauma of illness has shaped who I am in an intimate relationship.

That’s kind of a bold claim, and I have no doubt that there are many more factors that go into who you are in the context of romantic relationships. But I think any endo sufferer will understand the very particular set of insecurities that accompany years of attempting to accept the loss of control over your body. They will also probably understand the tendency to be overly forgiving towards your partner, due to that niggling feeling of inadequacy and the fear that they might just go and find someone better, someone who doesn’t roll around screaming at their own reproductive organs (just me?). I do have the self-esteem to know that I deserve to be loved regardless of the issues I have but it does go missing from time to time and I think a lot of people will relate to that.

I haven’t got a handle on how my illnesses affect me, or when they will or how to control my reactions to the pain, fatigue and depression I experience on a regular basis. When in a relationship I swing wildly between wanting to communicate those feelings accurately and wanting to be listened to and understood desperately, to wanting time to shut off, shut down, feel those feelings on my own and come back when I’m ‘fun’ again. Neither is working for me so far. When you don’t understand your own needs and moods it can be impossible to communicate them to a partner. Trying can result in arguments, misunderstandings – in my case I am incredibly defensive of my behaviour even if I know it wasn’t the best because it’s so much less painful then letting someone in and attempting to actually pinpoint that feeling (or accepting that you need to examine your own behaviour).

Being single, although I don’t necessarily want to be, is comfortable for me. Alone I’m dealing with my pain without having to explain to anyone what I’m feeling or examine the ways in which I deal with it. But it’s also really, really isolating.

The negative ways that people have dealt with pain/mental health problems in the past have stuck with me and as anyone who’s been in unsupportive relationships will know, that shit is hard to unlearn. Some have been insensitive and thoughtless and other times they simply haven’t known how to support me and here’s the thing: even I don’t know how they can. Although I am super sensitive, I am excellent at building walls and flouncing off in a rage rather than patiently working through bad feelings.Years of bad experience mean I don’t often feel like hanging around to wait for things to get worse (I’m not saying that’s what will happen, but that's what I anticipate).

It’s important to say that this is all entirely my own experience and in fact I’m not sure what the aim of this post was, whether it was meant to be encouraging or advisory or just a big ol’ rant, but what I do know is that I find it endlessly helpful reading and learning about how people with chronic health problems communicate them and nurture healthy long term relationships. Because I simply don’t know and it scares me (dw therapy is helping go to therapy everyone).

What I have tried to do since unpicking this all is think of the traits of my friends, who are perfect when it comes support (and know of my stupid defensiveness – soz). They don’t question, they don’t name call, and they don’t do the pity thing. They hang around, they ask if I need anything, they allow me to talk when I need to and distract me (nicely) when it is obvious that I’ve gotten into a negative spiral. They don’t say things like ‘but you were fine a minute ago/yesterday/your last period.’ They don’t insinuate that I’m exaggerating (these are all red flags in any relationship no matter how they dress it up). They feel my frustration with me and give me practical and emotional support (as I always do them – reciprocity is important).

Ultimately – you deserve someone supporting and loving who actively tries to understand you and how your health conditions affect you in every way. Examining your own behaviour through therapy, or even writing your feelings down is very different from blaming yourself for the failure of your relationships so I don’t want anyone to think that that is what I’m saying here. You examine your behaviour for you, as the shitty circumstances you’ve been put in can lead to negative behaviour that impacts you and your loved ones. To go off on my idealistic tangent – human connection is why we’re here and the better you can be at that, the more whole you will feel.

People are complicated, illness or no illness and if I’ve learnt anything from being made to examine my past, it’s that anger and defence mechanisms, as comfy as they feel, won’t help you or your relationship grow and they are often misdirected. My anger and frustration sometimes come from how I feel about the disease itself rather than peoples behaviours towards it and it’s exhasuting to be angry all the time. It’s important to wait until you feel that someone deserves you at your most vulnerable, raw self and equally important is knowing when to walk away when someone isn’t fulfilling your needs. Both are hard but I truly believe that if you think your relationships are being shaped by your illness, you need to try and take back some control, find your boundaries and work on (the horror that is) vulnerability.

I was also gonna talk about sexual trauma and endo in this way but that is a HUGE ARSE (v important) TOPIC for another time. Look after your minds/ovariez bbz.

[soovaryit]

Lets talk about SSRI’S (wooooo)

I wrote this because a couple of years ago, I was in need of a non-sensationalist or provocative review of SSRI’s. This is obviously entirely subjective and my own experience, but when I was researching meds for depression on the internet, literally ALL I saw were horror stories. I appreciate that the horror stories do happen and no medication is to be taken lightly (even if, more often than not, doctors throw whatever they want at you without so much as a conversation). Also I appreciate that the internet is a shit storm of misinformation and you shouldn’t neccesarily being looking for medical advice on there but you know we’ve all done it. ANYWAY.

I went on Sertraline (an SSRI) at the exact right time in my life. I’d had a deeply awful year when it came to my health, relationships and money (just to name a few) and I felt completely hopeless and devoid of any strength, motivation or joy. I was in near constant pain with endometriosis and was reeling from a horrible yearlong encounter with someone I should never have known. I had quit my job(s), left everyone I knew behind and gone to a new city to re-join the world of academia after seven years. Looking back, I don’t know how I could have thought that going on medication was some kind of dramatic choice because I honestly would not have coped without it. For those who are wondering what the conversation with the GP goes like, they are usually keen to get you to into therapy whilst being on the medication and I found the combination very effective (and HARD of course but endlessly worth it). It’s really important that you be honest with them about all the bad feelings and don’t minimise them. A lot of the time as soon as your dark, upsetting thoughts are shared they become a lot less consuming. So even if you’re not at the stage where you want to talk to a doctor, you can try and confide in someone close to you (my inbox is always open and I will always listen – but please bear in mind that I don’t have medical knowledge and can only advise you based on my own experiences). At the same time as beng prescribed Sertraline, I was put on the waiting list for ‘Step 3 High-Intensity Counselling’, basically a talking therapy that explores your childhood and past experiences to help understand where your continuing feelings of depression might come from. The first few weeks of Sertraline were difficult but bearable, mainly anxiety and physical symptoms like twitching and leg restlessness that interrupted my sleep. I also experienced one of the rarer side effects – urticaria (which is a fancy way of saying I got really rashy and hivesy). Although my GP didn’t mention these side effects, I know that they’re pretty common and if you’re worried about any of them when you go on an SSRI I would definitely contact your GP to make sure all is well. The Sertraline was excellent for the following months and the course of therapy had helped me figure so much out. It was the reason I started this blog, started to feel that I could be more open about my mental and physical health and start to find my own boundaries when it came to relationships. The side effects did, however, catch up with me and these were the ones I couldn’t deal with. THE DREAMS. Up until I started these meds I had the most pleasantly dull dreams imaginable. Then along came these chemicals that made me have the most vivid, bizarre, twisted scenarios play out in my head every night. At first, I kind of found it funny - I would write them down on my phone and almost weirdly look forward to what I would dream about. But they turned from surreal and harmless to disturbing and triggering within a few months and I felt they were actually quite detrimental to my mental health. I became anxious about falling asleep and I would dream so deeply that I never felt I had properly woken up. Reality and dreams became blurred together in my memories and I sometimes felt as if I was losing my mind, unable to establish events that had actually happened from what was happening in my head when I slept.

Another significant side effect was the loss of human connection I felt. This is a weird one, and again a feeling I initially enjoyed as I’ve always been deeply empathetic and felt other people’s feelings almost to the point of discomfort. With Sertraline it honestly felt like a switch had been flipped and I could be the ‘rational’ person I thought I’d always wanted to be (contrary to now where I feel rationality has absolutely little value to me lolol). I enjoyed that feeling for a while. Having always been a deeply emotional person, I felt like I needed a break from myself – my overthinking, over loving, over everything – and again, Sertraline provided that. I threw myself into university work and absolutely adored it. I dated someone and was able to stay distant, think sensibly about what I wanted from the relationship and end it when there were red flags.

All in all, Sertraline gave me A LOT. It gave me better mood stability and the ability to get up and go most mornings. Coupled with therapy it allowed me to do the most imporant thing - forgive myself for feeling so hopeless. The part of me that felt extreme guilt, that I was a burden and that no matter what I was just not good enough quietened down and allowed me to live my life.

It’s still strange to me that depression is considered only a mental health problem when the symptoms are often so physical - not sleeping, not eating right, no energy, no ability to socialise or connect with others. The body and mind are intrinsically connected and that's something we can't forget when discussing mental health. SSRI’s can really help with the physical effects and in turn the mental ones, but it’s important to check in with yourself and establish the pro’s and the con’s on a regular basis. It’s also important that you don’t believe the hype around them (the media love to trash them, doctors love to think they fix it all) - and make a choice based on you as an individual.

 The feelings that come with depression - hopelessness, low self-esteem, an urge to harm ourselves - can directly leak into the formation of relationships and the day to day of our lives and it’s important to keep a check on that and be able to speak openly how you’re feeling openly. It is difficult but imperative to your happiness. If you don't vent the bad it can be impossible to appreciate the good.

I realise none of this has been very profound but I simply wanted it to be a non-intimidating piece on anti-depressants. I went to a mental health awareness course last week where we endlessly discussed medication, psychiatry, counselling and everything in between. After a lot of talk on pills, therapy, etc, the resounding opinion was that honesty and empathy with yourself and others is a very important part of the healing proccess. Sometimes it's not the medical professional, or a pill or a therapist that makes the difference. Sometimes it's just the person who says I believe you and I'm here. And we can all be that person.

[soovaryit]

My wonderfully wise and caring aunt Valerie sent me these super healing herbs today 🌱 the holy basil (tulsi) plant is a stress reliever, source of vitamin c, immune system booster (just to name a few - this plant is miraculous!) and the lemon balm plant helps with anxiety and depression, improves skin appearance and is a powerful antioxidant. Combining them in a tea is HEAVENLY and they can be used in baths, as a soothing face wash - I'm so happy I've been introduced to them! Anyone who suffers with chronic health problems know that medication can have more disadvantages than advantages so it's a relief to find natural solutions. Just the smell of these two plants together has boosted my mood! The lemon balm is also good for nausea but there are so many benefits to these herbs you'll have to have a research yourself. Thank you @valandwill171 ! 💚🌱 #plantlove #ayurvedicmedicine #anxiety #depression #chronicillness #chronicpain #tulsi #holybasil #lemonbalm #naturalremedies #herbs #healingherbs (at Hyde Park, Leeds)

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I’ve been reflecting on self-care A LOT recently. I’ve also been reading a lot on it. Not so much the practical ‘how to take care of yourself’ part but the way in which the concept of self-care is written about and portrayed. Throughout the next year of university, my aim as Mental Health Liberation Coordinator is to hold self-care groups and events to explore the topic, share tips and ultimately give people a safe space to reflect on their feelings.

My reflection started with a piece I read by Kate Mccombs, entitled ‘5 Self Care Strategies that aren’t fucking mani-pedis’. It was more interesting than anything I’d read before on the topic and I loved the angry rejection of gendered, superficial acts of ‘care’. Don’t get me wrong, I love all things beauty and find them very therapeutic – but it’s not for everyone, and care like this is often rooted in gender normativity and materialism. The article also strayed from physical acts of care and went deeper – offering advice on how to sustain self-care practices rather than mask negative emotions with quick fixes. In my experience, it’s hard to strike a balance between physical and emotional self-care, and sometimes the pressure of ‘treating’ yourself or thinking yourself better can be exhausting in itself. I’ve also been thinking about how often it’s implicated that self-care should be practised alone – as ‘me time’ or when you’re having a bath, or in bed alone. In the past, I have definitely isolated myself through this kind of ‘care’ – often believing that I SHOULD enjoy being alone and forcing myself to do things for ‘me’ as if that is the only way to achieve happiness and self-esteem.

I absolutely treasure time alone, in a way that I never thought I would. Previously I had ended relationships because the anxiety I had about being alone was so strong that I felt I had to explore and conquer it. But what I’ve learnt from years of being single is that it’s okay to rely on people and it’s incredibly important to nurture your friendships. Those things sound so obvious, but when stuck in a relationship where I relied on that one person for everything, including my self-esteem and sanity, it was a significant realisation for me. So why shouldn't self-care be practised in a group?! Alone time is excellent, but if you start feeling isolated or disconnected from people, remember you’re a social creature and even when you don’t feel like it, connecting with someone could do you a lot of good. If you’re not feeling up to socialising but want some kind of human comfort, try spending time with someone close to you who will understand that you won’t be 100% yourself and do something nice and quiet together. Sometimes just having another person there, who knows what you’re going through, can make all the difference. And if a human isn’t available cats (and all animals) are amazing comforters. Even mine who regularly greets me by hissing (she loves me). Anyway – long story short I wanted to dedicate a few posts to my own self-care strategies that don’t cost a bomb and aren’t ableist or sexist (yay!). I’m always hesitant to be giving advice because anyone with health problems will know how irritating it can be to have the same stuff barked at you again and again by people who know nothing about your condition, but if even one person finds this helpful I will be pleased. 

·         Firstly - move. This one sounds basic af but I’m not talking about hard core exercise (trust me I’ve been given that advice enough to inherently resent it now). Sometimes when I’m in pain or feeling depressed I literally do not move for hours. I tell myself I need to rest and stay in bed which is completely right, but not moving at all can actually cause you to be in more physical pain and mean that your brain is getting no stimulation whatsoever. Now I simply try and make sure I move every half an hour – whether it’s getting up to make a cup of tea, hobbling to the shop for ice cream or just a walk around the park you know it will benefit you even if it doesn’t feel like it at the time. Also specifically to endo sufferers – my muscles get insanely tense when I lie down for long periods of time, which makes cramps and back pain sooOoo much worse. Simply doing a couple of basic yoga poses can improve the tension (even if I want to throw up after). Literally even just moving position every 10-20 minutes, if that’s all you can manage that’s fine!

·         Write about it. Another cliché! Soz. This one is easier said than done because I wouldn’t have dreamt of it a few years ago but since I wrote things down, I have felt better. Even if you literally feel nothing (pretty common with depression), try and describe the nothingness and make it into something tangible. It can help discover things you didn’t know you felt and stop feelings of depression and anxiety feeling all consuming. Also, it really helps pin down mood patterns and also prevents you from getting nostalgic about the past. When I have a bad spell I often think ‘This is the WORST I have ever felt. It has NEVER been as bad as this and I can’t see it getting any better.’ But obviously, I think this every time I have a bad spell. It passes, and I feel better, and the more I reflect on my feelings each time, the more evidence I have to help prove to myself next time that the feeling won’t last forever.

·         Stop shaming yourself. This is the thing that I STILL find the hardest. All I do is preach vulnerability, the importance of human connection and honesty with yourself and during bad spells (like right now), I tell myself I am pathetic. It’s mean and unnecessary and untrue but I do it. All the time. It’s a constant stream of negativity running through my brain that I am hardly even aware of. Every time I go through therapy, it stops for a couple of months and as soon as I hit a rough patch it’s back. The only thing that I’ve found helps with this is meditation. It has by no means stopped it but when you meditate you become much more aware of your own thoughts and that is what it’s about. I used to even shame myself WHILST meditating ‘I’m not good at this. I can’t stop thinking. Shut up brain. Give up.’ But just the act of sitting silently with your thoughts and trying to figure them out can be beneficial. Calm is an excellent app and has a lot of free sessions (or you can subscribe for more specific sessions that target self-esteem, anxiety etc).

·         Review your medication. I often get stuck in a rut with my prescriptions, taking them without a thought and assuming they’re at the correct dosages and they should be making me feel better. As we all know, this is often not the case. Every few months I visit my (regular) GP and we go through my medications to see what is better or worse. I was actually surprised when he first suggested this to me – no doctor had ever questioned the fact that I’ve been taking heavy medication since the age of 6 and was rarely noticing the effects that it had on me. Through this super simple conversation you can reflect on your physical and emotional health and adjust things if you need to. Or if everything seems to be working, it can give you a little boost to know that for now your symptoms are under control. As the random quote that I found on Google says - whatever soothes your soul. Try not to feel pressured to do certain things, or to be alone, or to enjoy being alone, or to go out and get drunk because everyone else is. Just do you. Gonna follow this post up with a list of cheap products that I use to chiiillll because why not. 

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Gaslighting! and how NOT to treat people with illnesses

Be it mental or physical, anyone with a long term and incurable illness will have received their fair share of scepticism, blame and disdain from people around you. Whether it’s in a romantic or platonic relationship, gaslighting and emotional manipulation can easily develop when you don’t feel healthy in your body and mind. Sometimes even those closest to you don’t understand, or simply don’t want to, and this can make the isolation that comes with these conditions so much worse. It took me a long time to realise that I had been close to someone who completely invalidated me and turned every situation into my fault. This would range from ‘You’re just having a period’ as I was sweating and crying from pain to ‘jokes’ about how no one would want to be with me now that I was ‘broken’. From others, there were also the ‘you’re just lazy’ jokes, the constant questioning of what was ‘actually wrong with me’ and the accusations that I was being ‘hysterical’ (never. ever. fucking use the word hysterical to describe a woman). And can I just stress that these were comments made which were ‘jokes’. Totally harmless jokes that made me deeply upset, self-conscious and ultimately void of self-esteem because I started to believe them. I’m the first person to laugh at my own misfortune because it is essentially my coping mechanism, but it was obvious there was something sinister (and often misogynistic) beneath these comments. These kinds of ‘jokes’ are emotional abuse (here’s a definition if you want to have a look). What led those people to constantly undermine me and what I was going through was nothing to do with me and if it’s happened to you, I can promise it’s nothing to do with you either. I was so good at justifying the way they treated me and spoke to me that I simply couldn’t understand how it wasn’t my fault. I WAS lazy, I was being overly dramatic, I was a burden, I was boring. It was something fundamentally wrong with me that someone had just happened to pick up on. This was such a familiar thought pattern for me then. It wasn’t until I started medication for depression, moved away and allowed myself to reflect on that time that I realised to what extent that person had damaged my confidence, my ability to be vulnerable as well as my judgements on what was normal and what was ill treatment. Although in that one relationship there were very blatantly unacceptable comments, there were much more subtle suggestions that the way I felt was my fault, or me being overly dramatic. It came from employers, people I dated, acquaintances. They were little things that would chip away at my already eroded self-worth, like being passive aggressive when I called in sick, or raised eyebrows when I attempted to talk about how what was going on physically was affecting me mentally. I had no boundaries at this point in my life. I thought relationships were built on endless empathy, compromise and struggle. I would have all the time, patience and kindness in the world for the other person and none whatsoever for myself. I would tell myself they didn’t realise they were upsetting me, they were only joking and would torture myself over how much of an inconvenience I must be. 

Long term illnesses will deplete your self-worth if you’re not very careful with yourself. There’s a reason that I constantly bang on about self care. I didn’t know how to be careful then and I don’t know now, but I am much better because I actively choose sensitive and positive people to surround myself with. You do not have to put up with people’s comments and opinions about something that only you truly understand. Especially in a romantic relationship because I know the guilt can become overwhelming when it comes to the horrific combo of depression and endometriosis. I definitely don’t have all the answers, but when I feel myself slipping into a potentially unhealthy situation with someone I ask myself if I would treat them the way they’ve treated me. If it’s a no, it’s over. If they have upset you and don’t want to take responsibility for that, it’s not ok. If they don’t apoligise, it’s not ok. If they endlessly repeat the same negative behaviour with the promise of changing, run a mile. Setting your own boundaires whilst being totally honest with yourself is the best thing you can do. 

 Through a change in my life plan, moving city and spending a long time trying to understand where my feelings of complete apathy towards my own mental and physical health came from, I realised there was nothing wrong with me. Most importantly I realised that I was not to blame for anything I’d experienced. Even doctors can be less than helpful, particularly when it comes to endo. From the consultant who asked me ‘why I hadn’t made more of a fuss’ after surgery, to the doctor who told me that pregnancy was a cure, sometimes you have to call people out on their blatant disregard for your condition. It’s hard, and luckily for me, I have caring and outspoken parents who were happy to call out these people and tell them that it’s just not good enough.

I write this knowing for a fact that every person who reads it and has been through a similar experience will know what I’m talking about. We live in an extremely ableist world that will relentlessly make you feel guilty for what you’re not capable of doing. We also live in a world that loves to deny women’s pain and invalidate their emotions. Remember that you deserve compassion, sensitivity and understanding, and although it is a never ending battle, you have to know that there are people out there who want to give it to you. I LOVE when people message me their stories and the feeling of solidarity I get from speaking to people who are open and kind about their experiences. Ending on a seriously cheesy note: human connection and shared experiences are infinitely healing. If you have suffered with problematic relationships, I’ll be writing about my experience with IPT (interpersonal therapy) which I start next week. This focuses on relationships that have caused negative feelings, contributed to depression and low self esteem and how those feelings stay with you and in turn impact new relationships (again these could be romantic or platonic). You can have a read of what it consists of here). If it sounds like something you could benefit from, it might be worth speaking to your GP about or contact your local IAPT service. 

[soovaryit]

Endo and employment.

So a long time ago I said I’d write a blog about chronic pain and work. I think it’s taken me a long time because it’s such a complicated and tedious subject for those who have to suffer shitty employer support along with the stress of illness. It’s also complicated because it’s entirely dependent on the nature of the work that you do, and having worked a huge variety of jobs since the age of 16 I feel that I’ve definitely encountered many extremes in how employers deal with illnesses like endo. Let’s start with my first job where my manager was a misogynistic arsehole. I’m 100% going to name and shame here because I feel no need to protect companies that don’t protect their staff. It was Schuh’s flagship store on Oxford Street in London, I was 16 and vividly remember being told that ‘period pain was not an excuse for calling in sick’. This was accompanied by some disgusting line like ‘can’t get away with that one here ladies!!!’ Hahaha yes it’s so hilarious how lazy we women are that we use something like bleeding profusely from our vaginas for 5-7 days as an excuse to have a short rest from our underpaid jobs where we’re overworked and underappreciated. What swines we are. Luckily for them, this was a year before my endo started growing and a few years before the pain became excruciating. It was also before I fully understood the extent of the blatant, everyday misogyny in the society we live in, so I think I laughed along and thought about how my periods were totally fine and that would never be an issue for me. Skip forward 5 years and I started my millionth retail job. I worked there for two and a half years and it was a constant battle to prove that I was ill and needed support. Even after it was diagnosed, my endometriosis was written about to HR as ‘women’s problems’ and I was told I just ‘didn’t seem myself’ at work whilst undergoing medical treatment consisting of a laparoscopy, a coil fitting, coming off of my previous pill and balancing what was at the time an extremely stressful person life. So I didn’t seem myself. The truth is I was grieving the loss of myself. As dramatic as it sounds I was coming to terms with the fact that I now had two incurable illnesses to manage, that my feelings of depression and anxiety were becoming too much to hold in but too difficult to speak about, as well as the fact that doctors were at a loss of what to do with me and my body. At this point in time, I didn’t know if the endo had affected my fertility and I’ve looked forward to having children as long as I can remember. I felt devastated and devoid of any personality or enthusiasm for everyday life. But, the fact is, I was a burden at work and made to feel as if I had to prove my own misery every step of the way (including an incident of being so emotionally exhausted I cried on the shop floor). I’m sure this feeling is SO familiar to so many people reading this, regardless of any specifics. Especially if you work for an established company where they know full well that you have rights regarding illness but would rather emotionally manipulate and blackmail you into working without a fuss because it’s less paperwork for them. It’s a familiar and exhausting process that I have been through time and time again. Alongside retail work I worked as a body piercer, for independent companies, with no contracts, no sick pay and no sympathy. Obviously, it was my choice to enter this highly unregulated industry, but it was my passion. I soon found out that staff are not protected by any means, managers have always been male, older and not interested in understanding the nature of my illness let alone supporting me with it, financially or otherwise. The last boss I had was loaded. There is no doubt in my mind that he could have afforded to give me my measly wage on the odd occasion that I was so shaky from medication that I couldn’t hold a needle. Instead, I was told to use my holiday pay, meaning that my ‘holidays’ across those two years were generally spent curled up in bed dreading my next paycheck.  

As usual, I’d like to stress the HUGE amount of support I had from friends, family and others employees that were always so helpful and kind at low points. However, not all people have this luxury and there are those that are in far worse pain than me, in far worse circumstances. All I can do here is equip you with the knowledge of your rights and let you know that I will always try and be as helpful as possible if you ever want to contact me regarding your work situations, as people have previously. Even if all I can provide is the emotional support, I’m so happy to do that because it is such a frustrating and isolating situation to find yourself in and I’ve experienced it first-hand. First off, endometriosis can absolutely be classed as a disability and don’t let them question you on that. Here is a description of a disability from the GOV.uk website: You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. And As a disabled person, you have rights to protect you from discrimination. These rights cover most areas including:

·         employment

·         education

·         dealing with the police

The Equality Act 2010 and the United Nations (UN) Convention on disability rights help to enforce, protect and promote your rights. The rest of the site states that employers are required to make reasonable adjustments for you in terms of working hours or equipment and that during the hiring process only limited questions can be asked about your health.There is also a copy of Equality Act Guidance regarding the definition of a disability that may be useful to read or present to your employer.   This is just scratching the surface of the documents and legislation that is available to protect yourself at work. It is boring and tiring to read through this information when employers should be the ones respecting it but if you do believe you are being discriminated against there is a lot you can do. However, I know that it takes a lot of strength to defend yourself and sometimes a significant amount of time to recognise that you are being discriminated against.  Below is a list of useful websites in regards to protecting your rights and recognising and acting on disability discrimination at work. Don’t hesitate to contact me with questions, advice and information and I’m very grateful to those that do already <3 Most of all, try and take care of yourself as much as possible and remember that your health comes first.  Inclusion London  ACAS Scope CIPD Also, a paper published by Dr.Colin Barnes from the Sociology Department of my wonderful university.

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First off I don’t want this to come across as if I’m trivialising depression in any way. It is serious, as serious as any other physical or mental illness and can absolutely result in death and you should take it seriously. I write light heartedly about serious things because that’s my way of dealing with life but I’m not disregarding or commenting on anyone else's experiences but mine. OKAY srs stuff over (kind of). A lot of what is written or spoken about depression feels cliche, simplistic and ultimately unhelpful. In medical terms it is black and white (we’ve all filled in the forms) - in the past two weeks, how often have you felt like a failure? In the last two weeks, how often have you felt that you have let yourself or a family member down? I could literally recite the whole paper here. At the other end of the spectrum, usually in the media and in the arts, it’s poetic, or dramatic, or suicidal, or puts you a catatonic trance for months on end (which is true for some people and that's important to know). Both the practical and emotional aspects of it are important to recognise but I can’t help but think that depression is just something that needs be normalised for it not to get worse. Here’s my dramatic description of it. Depression is a parasite that buries itself deep, deep under your skin and is awoken at the most unexpected and inconvenient times. It manifests itself in new and ugly ways - making you forget your sense of self, turn against people who love you, preventing you from enjoying anything, causing you to nurture addictions to unhealthy habits and people, It’s always there, but it is only a part of you and does not define you, despite the fact that it is often SO hard to separate from you. I have mild/moderate depression that I never took medication for until September of last year when I had an episode that lasted around 5 months. I never even knew what an episode was but mine consisted of crying almost every day, thinking constant negative thoughts about myself and my life, shutting out people around me, drinking to excess, getting involved with problematic people, being incapable of looking to the future and of seeing any positivity in any situation. Overall - hopeless, tired, not worthy of happiness. The reason I didn’t medicate was because 1) I never wanted to admit that I felt depressed and 2) People don’t talk about their experiences on anti depressants very openly, and although I knew a few people who took them I didn’t necessarily feel comfortable asking them about it as I was cautious. I would say around 80% of my depression is from chronic pain. I know this because before endometriosis symptoms took over my life, I had very occasional episodes where I felt unhappy rather than it being the norm which I had to fight against everyday. I am a functioning depressive, I am one of those people that hears ‘omg but you don’t SEEM depressed’ in a situation where I reveal that I take medication for it.  First of all - never, ever say that to anyone with a mental health problem because it is extremely invalidating. Second of all, the reason I don’t seem depressed when I feel it is because I spent such a long time trying to bury negative feelings in the back of my mind that I am incredibly convincing at faking happiness and positivity. In my particular case, I don’t mind that, because often it gives me a lift or at least allows me to coast along until I feel relatively normal again. This is because my depression is mild, for some it can completely disable them and I would never recommend faking positivity that you don’t feel unless you get some kind of positive outcome from it (which I generally do). Don’t do it to make others comfortable if it makes you feel less comfortable. On that note though, even when I have felt in the depths of despair I think its important to try and communicate to those around you that they can’t expect anything from you because you are unwell. The way people to react to that is usually how you find out which people are the right ones to invest your time and energy in. I watched some Ted Talks on the topic of depression yesterday and something said in this one really struck me. Andrew Solomon talks about depression being perceived as a veil to outsiders - something that clouds your judgement, a layer of sadness over your true self. But from the inside, depression feels like you’ve finally found the (harsh) truth. People underestimate how real the thoughts feel, how sadness can become a state of being and not feel like something that will pass, but who you really are at your very core. For me anyway, that is what I fight against. A few weeks ago I increased my sertraline dosage and I don’t feel any better. Because I’m in a bit of a low right now, I tell myself its my fault. I’m grumpy, ungrateful, pessimistic, lazy, spoilt, a drama queen. I am lucky because I have now, to some extent, trained my brain to recognise that this is not the truth. I’m frustrated, irritated and upset by these thoughts, but I know that I am a person who is loved, full of confidence and motivation and that the feeling of wholeness will come back to me at some point. I know that it is not my fault when I’m not at my best, I just have to convince myself often.   I worry these days that I am more comfortable in being sad than happy. I am more equipped to deal with bad than accept good. But although it can feel like it, depression is not a permanent state of being for anyone. There is no way I could speak for others about this but the one thing that is true of anyone suffering is that it will get better because it has before. Even if just for a while, it will. That kind of sentence used to enrage me. But now I repeat it to myself in my head, I look at photos from good times with friends and family and think of all the things I’ve done that have been productive and kind and brilliant and I try and try and try to recognise that and not let the feelings of unworthiness swallow me whole.  It’s a difficult conversation to have with anyone. GP’s can be unhelpful and unfortunately so can friends and people you trust because of the stigma attached to mental illness. I even know people who hypothetically can sympathise with it, speak openly about how difficult it must be for people to experience it - but when it comes to you, they have nothing to say and don’t want to get involved. Because it is easy to understand in theory but not in practice.  My best friend Alicia is one of the people in my life who consistently amazes me with her positivity and resilience in the health battles that she’s faced and how she turns her discomfort into beautiful, powerful and thought provoking art that will help heal others. Although comparing yourself to other people is completely misguided, she has gone through 10 times what I have and is my beacon of hope and strength when I fall apart. Doctors constantly misdiagnosed her, put her on medications that only made things worse, treatments that failed and the way she continues to open herself up to people about her experiences astounds me.  On the topic of medication, it is also a subject with a lot of stigma attached to it when there shouldn’t be. I absolutely should have been on medication a long time ago and I wish I hadn’t kept my curiosity and anxiety about it to myself. Specifically in the context of chronic pain: constant pain makes you depressed. It is pretty much a fact. You will feel misunderstood and angry and pathetic and beaten down by things that others don’t consider a problem. It is a different way of living, one that requires you to constantly adapt to new drugs, new ways to retrain your thoughts, new and different pain all the time. Being in pain since I was 6 years old has made me carry a lot of negativity that I used to be very self conscious of (and guilty about). But now I recognise that it doesn’t make me lesser than anyone and that there is a lot of power that will come from sadness and the worst part of the battle is simply not knowing when it will come. (This is a super good Ted Talk on chronic pain btw - gives me hope! and also an astoundingly beautiful song on coping with shittiness, if you don’t know Amanda Palmer you gotta get to know and I’m V happy to share my excellent depressed playlist with you).

[soovaryit]

PAIN CLINIC FUN pt.1 (do I ever do a part 2 to things I don’t think I do). I do find it strange that I’ve never been to a pain clinic or even extensively thought about pain. It’s something I’ve experienced from my earliest memories and I honestly haven’t thought of it in any way other than something real, physical and unavoidable. My (super lovely) parents came with me to my appointment on Wednesday and my mum pointed out that experiencing the intensity of pain that you do with these conditions, over such a long period of time and usually from a young age, is bound to have a psychological affect that has to be addressed separately to the condition and pain itself. Having pain clinics which don’t directly focus on the visible/physical effects of your illness, but instead try to change the psychology around pain is actually something really valuable that I hadn’t considered before. I wasn’t 100% sold on the clinics approach initially – a booklet about ‘pacing’ yourself, ‘accepting’ your pain and dealing with setbacks. It is practical, easy to implement and worth giving some thought but overall made me feel sad and as if I’d be someone resigning myself to the misery of the disease. The acceptance part for me feels too hard at the moment and the thought of ‘pacing’ – which is the idea that you rest before you feel bad and essentially live a calm, moderated and fairly boring life makes me imagine a future where I end up feeling more isolated and having more lonely days in bed than I do now. That sounds super dramatic. On the good days/weeks I live normally, feel generally quite upbeat and sociable. But the drastic up then down of every month is exhausting and it feels like I have two separate personalities (in pain me/not in pain me). Somehow I feel a little worse every time it’s those bad few days not matter how much I try and resist it.  I’m super lazy, I love days spent in my own cosy lil church house but it’s the fact I feel unable to function normally and have to stay in and lie down that really, really gets me down. Going off on a tangent here - recently the fact that I’m single also makes me feel worse. I know you’re not supposed to say that and I’m supposed to go around pretending I’m having the most amazing time being a single gal in my mid 20’s (and sometimes I do!) but I’m becoming more and more aware of the fact that I would really like to be able to make a relationship work as well as more aware of how difficult I find it making connections to anyone who is actually kind and patient and not going to make me feel worse because it actually requires you to let yourself be vulnerable which is SO HARD (don’t all rush at once to ask me out after that super bleak post valentines rant).  

ANYWAY enough emotional outbursts, back to the cheery topic of pain. At the clinic they’re about ‘maximizing’ good spells and ‘minimizing’ bad and that does seem like a good approach to me. The only reason I feel defensive about any part of it is because I still can’t seem to deal with the fact that this might not go away. And who knows, it might improve or even disappear but after this long I don’t cling onto much hope. I am so much better at accepting bad than hoping for good. But this could be really good. The occupational therapist I saw had also suffered from endo until she went into early menopause which meant she fully sympathised with my pain (a rare occurrence from medical professionals). I’m having a full medication review and monthly appointments to implement action plans, discuss outlooks on the pain and then figure out if they work when put into practice over the course of the month. I think the part of endo – or any condition with no cure - that you really have to get your head around is how long it might take to even start getting it under control. It takes on average 7 years to diagnose, so it shouldn’t be any surprise that it will probably take years to get the balance of diet/medication/what have you right, accept it as part of your normality and adopt a different outlook on the pain you experience. This is my new way of trying to approach it anyway - thinking about long term progress to get through the shit bits. I always feel in a mad rush to try new treatments, and am quick to criticise ones that don’t immediately work. I started taking the progesterone only mini pill (Cerelle) today, as well as keeping my mirena coil to see if it makes any kind of difference over the next 6 months. I’ll be taking the pill continuously for 3 months and then having my week break, which is something I did before the laparoscopy, which at least cleared up the cyst I had then and will hopefully clear up the one I have now. After the medical side of things, the clinic offers an approach even more focussed on coping with long term mental health problems that could be the direction to go in if this isn’t as effective as I’d hoped. To sum up another long winded ramble - it takes a lot for me to feel hopeful recently but if you’ve been thinking about asking for a referral to a pain clinic – definitely do it. The one thing amazing about it (that sounds blindingly obvious but bear with me) is that THEY VALIDATE YOUR PAIN. They listen and understand. They don’t tell you it’s not real because they can’t see it, or scan it, or poke you in the belly and make you say ow. They don’t sigh and throw more meds at you for lack of anything else to do or get frustrated when you say you feel like you’ve tried everything. And for anyone who suffers with chronic pain, you will know that validation and support for the pain and the negative mind set it puts you in is rare and much appreciated.  If I can manage to alter the way my mood and pain are so intertwined and break my almost constantly grumpy state I will consider it a success.

[soovaryit]

CW: DV, sexual assault, abuse

When domestic violence is spoken about in media or popular discourse it mainly refers to explicit abuse within heterosexual romantic relationships as well as being cis male on female. But obviously abuse manifests in a million different ways to a million combinations of people within in all kinds of relationships. This post is mainly a selection of articles that will act as a starting point to recognising abuse, as well as how to proceed if you believe that you are in a toxic and unhealthy relationship. This week I went to a workshop on consent and relationships, which was facilitated by the Sexual Wellbeing Foundation and aims to develop sex education beyond the physical act of sex - teaching people about what healthy relationship patterns look like and safeguarding them against abuse - education that is not as prevalent as it should be in schools, universities, workplaces - pretty much any institution you can think of.  It can be excruciatingly difficult and even humiliating to come to terms with the fact that you’re feeling manipulated and abused but websites and projects like these provide a positive outlook and sense of community between those who have been effected. Remember to keep yourself safe and never tolerate other peoples unkindness at the expense of your own wellbeing.   Identifying: Bustle -  9 Signs You're Being Emotionally Abused In Your Relationship, Because Love Shouldn't Feel Manipulative Stop Relationship Abuse - Types of abuse  Livestrong - What is physical abuse in a relationship? XOJane - Domestic Violence isn’t always physical and On Being a Transgender Woman in an Abusive Relationship  Galdem - Women Rape too and My Fearful Life: Growing Up With Domestic Violence  Everyday Feminism - Let’s Talk About Domestic Violence in the Trans* Community  Huffington Post - You’re Not Going Crazy: 5 Sure Signs You’re Being Emotionally Abused and Identifying the More Subtle Signs of an Abusive Relationship Recovering:  Psychology Today - What Drives Emotional Abuse and How to Begin to Recover Healthy Place -  How To Recover From Emotional Trauma of Domestic Abuse Good Therapy -  Recovering from Narcissistic Abuse Brene Brown - Boundaries, Empathy and Compassion 

[soovaryit]

Coping mechanisms part 2: how to cope when your coping mechanisms fail

Today was a BAD DAY.  I woke up from a terrible few hours sleep feeling shaky and anxious and completely disassociated (apart from the mega pain in my back/abdomen that was well and truly keeping me in my body). The first thing I tried to identify was why I felt this way, which is always a dangerous thing to do when you know you suffer from a long term illness. I usually try not to question my moods too much, but rather accept them and react to them in whatever way feels right. But then there are days like today when sitting inside made me want to rip off my own skin because I felt manic with anxiety. Going out in public also seemed like a terrifying prospect. Anyone who suffers anxiety will know that feeling: wanted to be completely isolated whilst constantly reminded that you’re okay, that you’re still yourself. That’s why anxiety can be so hard to manage sometimes, it’s different for everyone but mine is manic and panicky and the only way I can describe it is not feeling safe in my own body.  Today I actually had to read my OWN BLOG in an attempt to stop freaking out, which at first made me feel pathetic and then (as my wise, beautiful friend Ellie reminded me), I realised I had to treat myself differently today and try and separate the anxiety part of me from the regular me. All the things I would think about regular me did not apply today. There was no point in me trying to have a coffee, slap some make up on and pull myself together because I was beyond the point of rationality and too far gone into an irrational, inconsolable part of my mind.  The first thing I tried to do was look at the facts.  - I’d overdone it with substances the past couple of weekends (not in the grand scheme of things but by my current standards). - I’ve just increased my SSRI’s to 75mg (when I first started taking them the couple of weeks following made me feel manic - and it’s probably just that that’s happening again). - I haven’t been sleeping properly, and when I have I’ve had horrible dreams that leave me feeling fucked in the head long after I’ve woken up. (Sleeping and eating right are the two things that keep me sane - when either fucks up it’s a recipe for disaster). - I’ve gotten behind on uni work, and consistently wound myself up about it. (I don’t need to wind myself up - I’m in regular contact with the disability department who are completely aware that my attendance won’t always be great and I can watch lectures online AND I’m only in first year fgs). - I have a lot of medical appointments and procedures coming up that I’m nervous about. (This is something I can’t control or limit worrying about it, even though I’ve been trying more recently).  - THIS HAPPENS TO ME ONCE A MONTH. I need to get to grips with the fact that I am ruled by my hormones and monthly cycle and try to see it as almost a positive - at least I generally have an indication of what my feeling will be according to where I am in my cycle. (this is bound to completely mess up when I get my coil taken out and go back on the pill and I am dreading. it.)

Even with all those things in mind I couldn’t stop crying for hours and nothing would stop the unbearable, gut wrenching feeling that everything was completely wrong. Again, completely text book stuff for anyone with GAD that I’m sure so many people experience. For people who don’t have experience of it, I think the only way I can describe it that you think/act exactly as if someone has just told you something terrible, or you’ve experienced something traumatic. You cry, shake, have difficulty breathing, feel sick, faint, dizzy - but the problem is there’s often nothing that triggered it and so your mind goes on a ridiculous wander, searching for reasons as to why you feel like this, feeling guilty because you think it’s silly to be panicking. And so you go further and further into the panic and it seems like you’ll be stuck this way forever.  I feel about 40% back to my self again tonight which, although it doesn’t sound great, is a massive deal. The fact that I can even recognise that 1. feeling this way isn’t normal. and 2. there are logical reasons that led me to this point is something anyone should be proud of. If this had happened to me a few years ago I would have lied about it, brushed it off, said it was a one off and forgotten about it and that is something that fortunately I’m incapable of doing now. Everyone has their own ways of dealing with difficult feelings and situations and mine is to talk, write, listen to others and ultimately try and turn scary, isolating experiences into ones of solidarity and comfort through sharing them.  I’ve never known how I felt about being defined by an illness or ‘letting’ it define me but I do know that being aware of your own thoughts and how they can damage you is extremely important. Today, nothing really made me feel normal and tomorrow I might feel just as fucked up. But I know I didn’t feel like this a week, even days ago. I know that at some point I will feel like myself again, I just don’t know when that point will be. And that’s scary, and although this was one bad day, bad days can turn to weeks and months and get harder and harder with too many bad things building up. All you can do is treat yourself with compassion and respect even when you feel you don’t deserve it. You do, and I know the feels when you don’t want to look after yourself and what matters is that you try. Try everything. Cry, sleep, scream, talk to someone, cry to someone, text someone, go for a walk, sit at home, lie in bed, read, write, draw, shop, run, swim - remember that at times like these you don’t have to function ‘normally’. If you don’t feel well - take the day off. Having time out can feel like an inconvenience or like you’re failing (I know this all too well after working too many jobs for far too long when I was far too unwell), but it is a necessity and anyone who disputes that doesn’t understand. And they don’t have to, but they have to respect and tolerate and allow you to look after yourself. When you feel like you’re losing yourself it can feel like you’re losing everything, and the best thing to do is try to take a step back, try and understand what you’re feeling, admit that something isn’t right and go back to basics, whatever the basics are for you. And I’ll end with the number one most important thing - don’t isolate yourself, however tempting, it usually isn’t the right decision. I love spending time alone but not when I feel like this. I only want to be alone because I feel like a burden or annoying or embarrassed of how I’m feeling but ultimately I know that reaching out to someone in any way you can is usually positive (unless that person is a vile/problematic person - it can be tempting to go there when you feel shit but DON’T GO THERE. don’t. plz). I know I constantly bang on about Eve Ensler, but this talk is worth watching for anyone who thinks that what their body and mind is telling them can be ignored and pushed aside for every day routine - it can’t.  (I’m sure this could have been written a lot better but I am feeling fragile and need to zone out to some awful tv with my unicorn so I hope some of this made some kind of sense to someone ok bye)