chronicallyillandcoping - Tumblr blog

[chronicallyillandcoping]

always remember, you do NOT deserve the pain, you did NOT "earn" it, it's not some kind of karma that you have to pay for, it's NOT your fault, you're not guilty for your illness and never will

[chronicallyillandcoping]

Something I want able bodied people to understand is that I don't wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.

[chronicallyillandcoping]

if you have a chronic illness or disability i need you to hear this- this will be long.

you're allowed to feel sad/depressed/down, you're allowed to grieve your life and/or yourself, you're allowed to want it to be over.

you're allowed to have happy moments, you're allowed to enjoy your life and/or aspects of it, you're allowed to smile and just because you feel happy doesn't mean your pain is less.

good days are good and bad days are bad, and it's okay if you have no good days, and it's okay if you have mostly good days. it's okay if you're not diagnosed, it's okay if you are, and it's okay if you have lots of diagnoses. any of this doesn't make you any less valid.

no one gets to tell you that what you're feeling is not what you are feeling, just because you portray a picture of yourself to be something differently.

fuck being 'strong' and 'brave', you're surviving and every minute that you do is a minute of your life that's yours and only yours to choose how you live, don't let other's opinions on how they think a chronically ill/disabled person should live govern or influence your life. it's yours.

love you all, my dears

[chronicallyillandcoping]

Normalise mourning the life you may have had before chronic illness took over.

[chronicallyillandcoping]

Disability positivity is recognizing your disability, and adapting to it. It is the small wins each day, the things you accomplish.

Getting out of bed is an accomplishment.

Completing that task, however small it may seem, is an accomplishment.

Reading that book, is an accomplishment.

Making that thing, is an accomplishment.

Cooking dinner, is an accomplishment.

And even when you can't do all of that, just remembering to have patience with yourself and that productivity does not equal to your value as a person, is an accomplishment.

[chronicallyillandcoping]

It's wild to me that sitting up is "resting" for a lot of people. Like, sitting up costs energy to me and I cannot fathom how me sitting for most of the day is what others consider rest

Rest to me is laying down, barely moving, and not really using my brain, more-so just consuming mindless content to keep me from getting too bored

[chronicallyillandcoping]

Me: uses cane to ease leg pain

Cane: causes wrist pain

There's no winning

[chronicallyillandcoping]

shoutout to my chronically ill/disabled besties who need to sit down to do dishes/get dressed/brush ur teeth/cook/shower/other “simple” tasks that involve standing, i see u and i love u

[chronicallyillandcoping]

[chronicallyillandcoping]

i feel like for abled people who don’t have to spend a huge portion of their waking life in bed, it’s really easy for them to imagine it as some sort of constant relaxing vacation from ‘real life’ or from effort and feeling and working or whatever else

when in reality it’s like. im so restless. im so tired of being in bed. it isn’t comfortable. i Hurt. im hurting all the time and if i could not be in bed without being in huge amounts of pain, i would!! i miss being able to do things!! laying in bed helps the most, but a lot of the time it feels like a trap, not a comfort. a lot of the time it hurts too much to be doing anything else

i miss when laying down was a choice i could make for relaxation, when napping was an indulgence and not a necessity, when i could spend time and energy being upright and it didn’t even feel like effort !!! i don’t want to do this. this isn’t something relaxing or fun the majority of the time. it’s painful & frustrating. i wish people understood that better :(

[chronicallyillandcoping]

I think something that doesnt get talked about enough due to shame is poor dental hygiene due to disability. Years of mobility issues and mental health problems have led me to not be able to take care of my teeth and now theyre in quite poor condition that i dont think I'll ever be able to afford to get them fixed in a way I'd be happy with.

In December I visited a dentist for the first time since i was 16 (partially due to them not sending me reminders and partially due to me purposefully not chasing up those lack of reminders) and i was so so scared of being judged. It feels shameful to admit but i needed 4 fillings. Im having my last one in 2 weeks and I will probably need more further down the line.

I think my point is that be disabled can make things abled bodied people see as basics really really difficult and there shouldnt be so much shame surrounding things that are out of our control.

[chronicallyillandcoping]

I wake up in pain, spend all day in pain then go to sleep in pain. This cycle then repeats on a never-ending loop. But sure Karen feel free to complain that i get a parking space closer to the door than you.

[chronicallyillandcoping]

[chronicallyillandcoping]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

[chronicallyillandcoping]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[chronicallyillandcoping]

When a chronically ill or disabled person gets their lab tests back as “normal” or all clear, we aren’t sad because we WANT to be sick.

We’re sad because we *know* there’s something wrong with us, yet the scans still stay clear.

Before you kill the monster you gotta know its name.

[chronicallyillandcoping]

disabled people don’t have places to sit/rest in public >> disability activists advocate for public seating >> on rare occasion it gets approved >> abled people take advantage and use up all the seating >> abled people refuse to give up seating for disabled people who advocated for it & need it most >> disabled people still have no place to rest and remain isolated from general public. rinse & repeat