Things People With Undiagnosed Illnesses/Conditions Wish You Knew
If this is part of your life story, please share your insights! What would you like the rest of us to learn? What should we know about people in this community? How would you like people to interact with you? Should people ask questions? What’s the best way for people to learn about this? Do you have any resources (books, movies, YT videos, etc) that will give us greater understanding and empathy and kindness toward people who experience the same things you do?
If you’re not on this journey, we welcome you to listen, learn, and ask respectful, good-faith questions! Open-ended questions are highly encouraged, as they give people the space to share their unique experiences in their own words. While this is a safe space to learn about things you’ve never experienced, please remember to be sensitive, and avoid sharing harmful stereotypes or debating someone's lived reality. If you have a question, ask it with empathy. If someone gently corrects you, please be open to learning. Let's have a gentle, fun, friendly conversation where we support one another, because it takes all sorts to make a world!
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I’m adding a taglist to start, but this post is open to absolutely everyone! <3
@jesusredeemedme2425 Do i count? Headaches since i was tiny, no diagnosis. If I count, whats bothered me is the way people try to fix it. Like, have you tried glasses or a new diet or something-something. Dyou think I want to be in pain? Ive tried everything!
I know it comes from a good place, ofcourse. And i try to hold on to that. But sometimes I wish I could just say something like "i have migraines" or "i have x condition" so that i dont have to spend more time explaining. It feels like justifying myself, why Im in pain, like I did something wrong. And when I need some concession in school etc, teachers seem to blame me for the headaches in the first place ("if you ate more...") which rlly isnt how that works
Part of the reason I dont have a diagnosis is that my family doesnt think I need one. We have a history of migraines, but there are enough differences that I wonder if thats whats up with me at all...and no diagnosis = no pain killers stronger than panadol, too. Bit of a mess.
You absolutely count! <3
I’ve been having issues with migraines myself. I feel your pain. :(
@unassumingEyes
This is incredibly tough.
@unassumingEyes ❤️❤️
1. I'm not faking.
2. Just because I don't fit into your neat lil diagnostic bubble, it doesn't mean I don't have it. Not all conditions have the exact same symptoms.
3. I'm not wasting a multitude of Doctor's time, trying desperately to be taken seriously.
4. I'm not crazy. The way I was belittled, talked down too and dismissed by GP's, consultants and specialists, left me a wreck. I questioned my sanity, was I making it up?
4. I'm not exaggerating, if anything I'm not telling you every lil aspect of my symptoms and how it affects me on a daily basis, physically and emotionally.
5. Just because I can do things, it doesn't mean I should. Certain things cause pain in such a destructive manner that later on or the next day, I can barely do the basics, like moving.
6. Don't tell me or force your opinions on what I should to treat myself. I know what I'm capable of doing. I know what works and what doesn't.
7. Don't act like I have a temporary ailment like the flu. My health issues are aggressive and permanent, there is no cure and it will get worse.
8. Don't try to cheer me up or say Look on the bright side. Being sick is hard. It takes a toll. Sometimes I want to fall apart and mourn for my future. Let me be, however you want to cope, works for you. Mine is up and down.
9. Don't call me lazy for wanting to rest and take it easy. My whole body feels like it is permanently straining itself just doing the basics. If I don't want to do anything or sleep late or just be self indulgent, leave me to it. My body needs it.
@ScrabbleBrain Thank you for sharing with us ❤️
@fossilfellow No problem. It's life for some us..
@ScrabbleBrain ❤️❤️
ohh very good one!