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Your Most Misunderstood Symptom

User Profile: AffyAvo
AffyAvo March 4th, 2018

I missed rare disease day, but what of your symptoms is the most misunderstood or the most difficult to explain to others?

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User Profile: convivialPlum6966
convivialPlum6966 March 12th, 2018

That im always in pain, and that pain killers wont help. Its not usually very bad pain, and Ive been in it so long that a lot of people who know me dont even know im in pain, until I go to do something that hurts more than the norm and I cry out in pain and then laugh. Weird reaction I know. Tired to that would be depression, but will stay away from that creature, while its not around lol

OR

I dont know if this counts as a symtom, but the lack of control I have over my life. I seem pretty independent when people see me in public, I work very hard to keep that appearance up. But things like having to be home at a certain time, or get up at a certain time. Just generally having to organise myself and my plans a lot more isnt something people I know tend to understand.

1 reply
User Profile: AffyAvo
AffyAvo OP March 13th, 2018

@convivialPlum6966 Yes, we can have less freedom due to medication schedules, therapy schedules or when others are able to help us.

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User Profile: VinylFly
VinylFly March 13th, 2018

@AffyAvo Brainfog/chronic mental fatigue. People often assume that I'm much lower functioning mentally than I actually am and are so quick to judge and write me off as being less than the capable, educated adult that I am. Most people aren't that patient sadly and won't give me the extra few seconds I need to process and respond to what they're saying. Slower does not mean dumb or incapable. Some people's brains just work at different speeds but that doesn't make them any less of a person than anyone else <3

1 reply
User Profile: AbsurdBook399
AbsurdBook399 March 15th, 2018

@VinylFly yes! exactly! I have an IQ of 133 and an above average memory and had a pretty dang good education. I get treated like I'm stupid a lot because on days when the brain fog is bad I can't concentrate, stutter when I try to talk, get kind of dyslexic when I write, and even my hearing doesn't seem to work right. Nobody can understand how for the last week I've been functioning at an impressive level but today I'm just a glitchy computer that's lucky it even turns on.

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User Profile: MeaningfulSilence
MeaningfulSilence March 15th, 2018

@AffyAvo

Great thread Affy!

Cheers!

User Profile: KayliSiore431
KayliSiore431 March 22nd, 2018

Hair loss! A lot of people assume it is because of cancer, but there are so many different reasons why people can lose their hair!!