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Nia | The Chronic Notebook @chronicnotebook

Here to smash societal stigmas about #chronicillness & #disability💊 Life with #ibd #eds #migraine #fibro #dysautonomia & more 🦓 IG 49K📷 Join Discord⬇ she/her

Joined December 2020
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It still shocks me that people wake up everyday and just feel... healthy. No pain, no fatigue, no headache, no stomach ache, no joint pains just... a body floating through the day. As a chronically ill person I literally cannot imagine or remember what that feels like.
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Me to myself at the doctor's: Ok smile but not much or you'll look too happy, stand up for yourself but not too hard or you'll seem rude, convey how bad this is but don't get emotional or they'll think it's in your head and don't use medical terms, they'll think you Googled it...
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Nia | The Chronic Notebook retweeted
Generation Patient@genpatient
6 Sep 2023
The Virtual Health Advocacy Summit is almost here! Join us from September 12 - 16 for a no cost schedule of sessions and speakers on the real issues that affect the lives of young adults with chronic conditions and rare diseases. Register now: events.zoom.us/ev/AiBiKsfsNY…
Illustration of a Brown person wearing a green shirt with their head in their hands, with an open pill organizer and pill bottle beside them. Words like “body image, health policy, and travel” surround them in the light blue space of the image background. Text at the bottom of the graphic reads: “YOU ARE NOT ALONE. Join the global community of young adults with chronic and rare conditions. REGISTER FOR OUR VIRTUAL SUMMIT TODAY” with an arrow pointing to a QR code.

ALT Illustration of a Brown person wearing a green shirt with their head in their hands, with an open pill organizer and pill bottle beside them. Words like “body image, health policy, and travel” surround them in the light blue space of the image background. Text at the bottom of the graphic reads: “YOU ARE NOT ALONE. Join the global community of young adults with chronic and rare conditions. REGISTER FOR OUR VIRTUAL SUMMIT TODAY” with an arrow pointing to a QR code.
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The idea that random people expect others to prove their illness or disability to them is ridiculous, because what do they want as proof exactly? Doctors letters? Discharge notes? Prescriptions? Receipts for medical devices? Pics of my puke? Like what qualifies in this criteria?
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People towards the chronically ill and disabled be like: If you hide your symptoms we will doubt you, but if you show them we will call you hysterical. If you hide them we'll assume you're better but if you show them we'll assume you're attention seeking. Sound good?
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It's hard when people act like those who endure long term illness should be grateful for the "resilience" that gave them. Nobody gave that to us. We had to develop it alongside trauma, grief, pain and exhaustion. It's ok to find it difficult to be grateful for that sometimes.
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"But you wouldn't be who you are today if you'd never gotten your illness". You're right, I'd be someone who didn't need to psych themselves up to do basic tasks, someone who could make spontaneous plans, follow any career, feel energised. Strength is nice but health is better.
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Person 1: I sprained my ankle Them: Oh gosh. That sucks. Are you okay? You need to rest. Health comes first. Person 2: I have a chronic illness and I'm in pain all the time Them: But you look fine though?
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There's a difference between being tired and fatigued. Between not wanting to do something and not being well enough. Between not working by choice and not working due to illness. Between being unreliable and living with an unpredictable illness. There is a difference.
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Them: "It must be so nice to stay at home all day" What we're actually doing at home with a chronic illness: Lying down, staying in bed, feeling terrible, being too exhausted to do anything, to watch TV, to shower, to talk to anyone, to make meals, to move. So no. Not nice.
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Fun story. I told a nurse I had heart related symptoms and she said "Who says so? A doctor? A cardiologist? Or are you a doctor yourself?" Because apparently you can't attempt to describe your symptoms without a doctor saying you have them at all. Medical gaslighting is fab.
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Imagine you're carrying a heavy weight which nobody can see but you. It hurts, its exhausting, it's affecting your life, but nobody believes it's there. So you carry it alone for ages, waiting until someone sees it too. That's what getting diagnosed with chronic illness is like.
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Chronic illness would feel a lot easier if there wasn't a part of our souls that shouted at us about all the things we could have done if we'd been healthy. If that part wasn't there to keep reminding us about the things we've missed out on, it would hurt so much less.
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Please know that you can't see all the things a chronically ill person has tried already. You can't see all the meds, exercises, sleep patterns, diet changes, yoga and supplements they've tried. You can't see that they're always trying. So please don't every assume they're not.
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Nobody that has a long term, chronic physical or mental illness is automatically strong and resilient. They've just had to be in order to survive. Most of them would sacrifice that strength for a little less pain.
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Chronic illness might not be serious enough to kill you but it can be serious enough to completely change your life and that's the weirdest place to be. It's like a constant state of existence and non existence at the same time.
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One of the hardest things about chronic illness is constantly trying to accept your new reality while letting yourself grieve for the life you could of had. You're trying to forge a life with pain you never expected while trying to mourn the future you could of had without it.
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Nobody talks about how scary facing medical gaslighting is because you're taught from a young age that medical professionals are willing and able to help. Plus there is no-one else to to turn to. If the doctors don't help or believe you then who will?
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Chronic illness be like : if you hide your pain we will doubt you, if show your pain we will call hysterical. Sound good?
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Living with chronic illness is like being given a house to live in that's got a thousand alarms going off, cracked walls, caving in roofs, broken windows and fires burning...but still being expected to build your life upon that home and foundation as easily as everyone else.
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Chronic illness leaves you swinging between two states of mind. Between "I can't let this illness control my life. I can accept this." And "I don't know how to live with this illness, how to accept all this loss and change. I'm exhausted". Constantly being torn this way is hard.
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