shoutout to the confused chronics
shoutout to the people with chronic fatigue who have no apparent reason for being so tired
shoutout to the chronically ill people who feel like they can't use that term because they don't know what's wrong with them
shoutout to the people with chronic pain who only have diagnoses of the mental kind
shoutout to everyone afraid to use the word chronic even though they suffer every day
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I'm mentally ill, neurodivergent, and have ibs.
my mother has fibromyalgia, arthritis, carpal tunnel, bursitis, insomnia, and probably more.
I find myself comparing myself to her all the time, thinking things like "my pain isn't that bad," or "at least I don't have fibro," or "I'm just being lazy." I hesitate to take pain meds because I feel like I don't "deserve" it.
comparing pain in this way is an awful practice. it prevents people from getting the treatment and validity they need.
no, I don't suffer the way she does. but I still suffer.
I have back pain daily. I regularly have to do physical activity which makes it significantly worse. I have a shitty mattress that gives me no relief.
when I have to lift heavy things or sleep wrong I sometimes get pain all the way from my neck to my knuckles.
I get joint pain especially in my knees and ankles when I walk too much or when the weather is bad.
I get unpredictable nausea and have to be constantly vigilant about hydration, staying cool, and trash bags even when I am out in public.
I have chronic fatigue that I can't explain other than the ibs and mental health, so I hesitate to use it. but that's what I have. no matter how much I sleep, I am exhausted. it's hard to get out of bed and when I walk it feels like my limbs are filled with lead. in school I struggled to stay awake in class sometimes.
sometimes I have trouble talking. it can be because I'm feeling nonverbal, because my anxiety overwhelms me, or because my nausea or fatigue get so bad it's literally difficult to use my voice. it takes too much energy.
my ibs is a nightmare. stress makes it worse, and then I stress over the ibs, which turns into a vicious cycle. I missed a job interview because of this. I will probably never have a 9 to 5 job because of this.
I am 24. I should not be feeling like this. but I do. I am.
so yeah. shoutout to the chronic people who feel like they don't deserve to use that word. whatever your problems are, even if - especially if - you aren't diagnosed with anything: I promise you, you do.
you deserve validation. you deserve an explanation. you deserve relief.
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Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.
Shout out to young disabled people. We exist.
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Do people not remember that period on Tumblr where neurodivergent people completely threw physically disabled people under the bus to further their movement? And then they wonder why we want our own space.
Things used in arguments I heard about 10 yrs ago:
- "you wouldn't say/do that to someone in a wheelchair"
- "we are literally physically disabled too bc our brain is an organ!!!"
- "physically disabled people get everything look they have special parking spaces and ramps!"
- "when you go to the doctor for physical illness they immediately give you all the medicine and work hard to find a cure like Dr. House, but when I go to the doctor they throw me out the window" (stuff along those lines at least)
Y'all kicked us out, ignored us, made your own lil club with its own terms, turned us into jokes and strawmen, and abandoned people who are both physically and mentally disabled.
We wanted solidarity and you all didn't.
But how dare we make our own community so our voices can be heard, god forbid we discuss issues important to physically disabled people in this community without mentioning neurodivergents. And when we get even a little pissed off? How dare we.
And it's happening again. I've seen the same rhetoric repeated. No one is saying that mentally disabled people have no issues or don't face ableism at all. Stop bringing up your issues on our posts, it derails it and clogs up the notes.
We had to separate ourselves because you all kicked us out first so that neurotypical people would accept you. You didn't want to be associated with the gross ugly cripples.
Cripplepunk community is not the same as disabled community. It's under the same umbrella, not a replacement. Stop taking over our spaces and stop posting shit in our tags.
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Alternative responses to the question ‘How’s it going?’ For physically disabled people:
- ‘The going is heavily assisted.’
-‘On without me.’
-‘It uses wheels’
-‘It’s not.’
-‘Against my will.’
-‘With frequent breaks’
-‘On pure spite’
-*That was a verbal question and I couldn’t hear you*
-‘We don’t have all day to go through enough medical history to give you enough context to understand exactly how it is going.’
Feel free to add your own
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I love when you reach the point in a conversation with a new specialist where they ask "so other than x reason you are coming to me, you're healthy?" I always want to burst out laughing because if I had a penny for everytime a doctor asked me that, I would have a whole dollar. But, instead, I start listing my various chronic illnesses and watch their expression get increasingly disappointed. It's so funny.
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Recently described my heart palpitations and the way feel as being like walking down the stairs and missing a step. One of the doctors said “That’s a really good metaphor!” And I was like *yes! I’m gonna get a good grade in doctors appointments, something that is both normal to want and possible to achieve!*
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no, @ me, you're not faking
no, @ me, you're not an attention seeker
no, @ me, you're not healthy and able-bodied
no, @ me, you're not lying to everyone
no, @ me, you're not using your cane to draw attention
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Shout out to everyone who is young and disabled. The judgment that comes with it is so hard especially if you’ve been invalidated for so many years. The fear of using a mobility aid in public and getting stares or nasty comments is something I will never get used to.
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