insidestory1

[insidestory1]

Yes, there is nothing wrong with showing a little extra kindness to people who are having a hard time? Why would get upset about that? Some people are so strange.

Ik when disabled people get special treatment it pisses some weirdos off but its so hard being disabled, if the guy at the rock show wants to sell me a rock with a 20% discount because he sees me in a wheelchair, then im taking that win, fuck it i deserve it.

[insidestory1]

Ableism is “a system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. ” - Talila Lewis

[insidestory1]

Since my endo got really bad, I've been getting a lot of suggestions from friends and family about how to deal with it. And on one side I appreciate it, I really do. I know I'm lucky to have people who care about me, and who want to help me get better.

At the same time, it's exhausting when everyone has a different bright idea about how you should deal with your illness. It's exhausting having to explain over and over to different people that no, I've already tried that, or no, that thing their friend used wouldn't help in my case. Most of all, I hate it when people make me justify why I'm going for X treatment and not Y treatment that they think would be much better.

I appreciate that people care, but I'm so sick of dealing with their input.

[insidestory1]

I love a realistic goal.

The challenge I'm doing right now is called July, where I just try to get thru every day of July

[insidestory1]

This would improve the medical system no end. Also, could we please extend this to politicians who cut disability benefits and don't prioritise the care of vulnerable people?

I wish they could invent a medical device that temporarily transfers your symptoms and pain to the doctor treating you and it worked like a shock collar. “I think light exercise would-.” and then bam they’re rolling around the floor clutching their stomach in agony and dry heaving.

[insidestory1]

UK government! Look at this and be ashamed! Some countries are taking things forward and you're taking trans rights in the UK back 20 years.

[insidestory1]

This picture just perfectly expresses how I feel right now.

I know better days are ahead, I know that things won’t always feel like this; I just hate high pain days that couple with days where my depression is awful too.

[insidestory1]

The last few day my head gets me thinking I'm making my symtpoms up. Because I won't be able to walk properly or my eyes gets a bit blurry or eating is hard. Or maybe one of my symtpoms isn't as bad as usual . And a tiny voice whispers, "It's not real, why wouldn't you be able to walk. Just walk. Just see. Just talk. It's not that hard."

I've only had this since getting a diagnoses so I don't know what to make out of it. Because I know logically what happens when I push myself.

[insidestory1]

It's a slightly different kind of reason, but not being able to eat with you also applies to some autistic people. In this case, it's because the person finds eating with others intensely uncomfortable/stressful. Sometimes to the point that they literally cannot do it. Again, don't pressure them to eat with you if they're not comfortable doing so, and remember that it's not personal.

Things We Wish Able-bodied People Knew | Part 6

Some people can't eat (with you). It might be allergies, ARFID, a gastrointestinal disorder, or something else. No matter what it is, don't pressure people to eat.

(Some people who can't eat are still happy to be around you while you eat. If they say it's ok, it doesn't need to be awkward.)

____

Leading up to July, I asked around the community to find out what disabled people wanted able-bodied people to know this Disability Pride Month. I collected 30+ answers and I'm sharing them all under the tag #Things We Wish Able-bodied People Knew. If you're not disabled and not chronically ill, and you learned something from these posts, please share the ideas with your friends, family, and workmates ✌️

(**These answers are from people in my orbit so most answers were from people with physical disabilities and chronic illness was a heavy influence. I would love to share some insights from people with sensory disabilities, neurodiversities, and other disabilities that have things to say to the able-bodied that haven't been covered in this series. Please send an ask or drop a comment, or let me know about a post I can reblog.)

[insidestory1]

I was talking to my mum about my endometriosis. Specifically about all the rotten stuff I've been putting up with from the medical system. My mum is Christian, and she told me about one of the stories in the bible where Jesus heals someone. This one was about a women who had been bleeding for twelve years straight, and who had spent all her money seeing doctors who'd done nothing for her. I'm now cry-laughing because aparently women's healthcare hasn't changed in 2000 years.

[insidestory1]

I do hate the way some people synonymise "I don't need" and "nobody needs". Or "I don't find this difficult" and "this is easy for everyone". Why is it so hard to realise that different people have different experiences of life?

“A pop can tab opener? Who needs that?”

It’s not for you.

“Why would anyone get a hairdryer holder, just use your hands to hold it.”

It’s not for you.

“Portable collapsible stools are proof of how lazy this generation is getting.”

It’s not for you.

“A chord assist for a guitar? Why don’t people just use their fingers like everyone else?”

IT’S NOT FOR YOU.

Fun fact! Not everything is about or for you!

[insidestory1]

I feel like I'm slowly dying from pain and exhaustion and the strain of wondering when I'm going to feel any better.

[insidestory1]

I've spent the better part of my life with health problems that nobody could detect. As a child, I started to rebel against doctors visits because they all went the same way. Someone would poke and prod me, listen to my chest, maybe take a blood sample. Then they'd tell me they were sorry, but apart from the fact that I didn't feel well I seemed to be completely healthy. Things went more or less the same way when I was an adult, and it reached the point where on some level I assumed that the cause of my pain would always be invisible to other people. Something that people who cared about me would take on trust was real, but which could quantify or understand from the outside.

Then the other day, I had a laproscopy to check for endometriosis. I think some part of me expected that nothing would show up, despite the symptoms matching perfectly. It was sure to be some invisible illness again. So when the doctor showed up post op and said, "Yep, you've got very advanced endometriosis. No wonder you've been in agony," I felt almost pleased. It was the first time anyone had been able to look at my body and understand how much pain I was in.

The feeling didn't last, of course, and now I'm curled up crying because I have to go into menopause at age 25. But. Still.

[insidestory1]

Sometimes, to encourage myself, I think about what life will be like if I can get my endometriosis treated. The pain is so bad right now that I'm bed ridden. I think about going back to a life where I can get up and do things again. Then I remember that even if my endometriosis is treated, I'll still have the fibromyalgia. I'll still have days where I wake up aching and tired sick. It'll still be a struggle to do more than one or two things in a day. I try to keep on the positive side, tell myself that maybe my fibro will get better. I have a friend who's fibro is much better now than it used to be. Then I remember that I would still be autistic. Interacting with people would still be hard and exhausting. I would still go through the world feeling like I don't have a place in it. At that point, I stop even wanting to get better.

(Sorry this is such a dark post. Health struggles have not been going well for me recently. Don't let me put anyone off, positivity is important, doing everything you can to help yourself and feel better is important. I'm just going through one of those patches where I can't see it.)

[insidestory1]

I feel this. Also, while I don't actually think that life would be better if I had a visible disability, I do sometimes wish that my body would just give me some solid, quantifiable sign that I'm not making a big deal about nothing. Some sign apart from all the pain and exhaustion, I mean.

having an invisible disability is so ridiculous because sometimes even I forget it's there and suddenly I'm like "oh hey why tf am I in so much pain right now" and then I remember that my body just Does That

[insidestory1]

I am so tired. There are so many things I need to do. I need to feed myself. Wash myself. I need to remember to drink. I need to speak to the people around me and make energy to spend time with them, even if it's just a little. I need to deal with bureaucracy. I need to make decisions about my health, like whether to go ahead with a major surgery that might fix problems or might make more. I need to keep up with my friends, if I don't want to lose those relationships. I need to work out if I'll ever be well enough to see those people again.

I'm so tired that doing even one of those things feels overwhelming. I haven't slept properly in months because I'm in so much pain. I just want to curl up and cry.

[insidestory1]

I know this isn't my usual post but I just want everyone in the world to know (Especially in the USA) being autistic is not a bad thing. It's not an epidemic to eradicate it is a way of existing that most people can't be bothered to learn to respect and that is fully on them, not on anyone who is autistic. I myself am autistic and sure it can make some things harder because the world wasn't built for us but it does need us, every single one of us and I will fight for us forever. If you disagree with this unfollow me immediately. Alternatively if you are struggling dm me.