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Those with seemingly invisible disabilities?

I have dyspraxia but no one notices it. The only people who know I have it are my family, who were there when I was diagnosed.

The majority of people I've been in contact with don't even know what dyspraxia is anyway, so there's no point in explaining it. They just think I'm really clumsy sometimes and people can get a bit frustrated when they need to tell me something again, as sometimes I don't get what I have to do first time.

But I'd rather no one knew. I didn't even put it on my UCAS form or anything.

Reply 61

Titch89

14

Ice_Queen

I have bi-polar disorder, which tends to show itself, if people know they're looking for it (otherwise I just seem drunk/high).

I'm not bi-polar do find that it does show itself if people know what they're looking for. I have an inability to walk in a straight line, which once led someone to ask me if I was drunk. :o:

If I am drunk, I walk properly.

Reply 62

Ice_Queen

17

Titch89

I'm not bi-polar do find that it does show itself if people know what they're looking for. I have an inability to walk in a straight line, which once led someone to ask me if I was drunk. :o:

If I am drunk, I walk properly.

Well my thing is if I'm depressed I stay home, so no-one sees me anyway, stable I'm OK, and high I just seem drunk/high, and since I neither drink nor do drugs...

I was actually told at one point my pupils were dilated and I was DEFINITELY on drugs. Took me a while to convince him I wasn't.

Reply 63

SteveeRoo

I have AS, Dysphraxia and Dyslexia, I am also Abino fortunately my AS comes acrossas really quirky I am not the typical isolated AS person and luckily my best friend has AS and we managed to notice it but no one else has only my best friends who I am living with as I have a scizoid like persona so I thoght I'd warn tem prior s I can get vry one track minded and hyper

Reply 64

username94219

20

Mine isn't noticeable @ all.

Reply 65

Clojio

I have depression, which is noticeable if my arms are showing (enough said? self-inflicted scars) and is also noticeable to people who know me well enough to recognise a really down episode (which is very few).
I also have juvenile arthritis, which is an autoimmune disease which manifests as huge pain in joints, plus fatigue. Both invisible. The only clue anyone would get is that my walk changes all the time to make up for pains in hips/knees/feet, and I constantly switch my writing from one hand to the other.

Reply 66

GapYearGirl

7

I have ME/CFS but most people just think I'm lazy/anti-social/boring/can't be bothered. But then a lot of people think that's all ME/CFS is anyway so it's often easier for them not to know than for me to get the whole "Why don't you just sleep more?"/"If you just pushed yourself I'm sure you could do it"/"I'm tired and I still come to school" etc. etc. etc.

Sometimes it's pretty obvious there is something wrong with me, but during the times that I am functioning better I think it can still be picked up on. In fact, I know it must be becausepeople have commented on it before they knew anything about it.

Reply 68

laulau30

RemadE

Crohns disease here. Suuuucks...

it sure does !

Reply 69

m.grump

11

It's difficult because really my disability would ideally always be invisible, and so no-one would have to worry about it, including me. And that is always what I'm trying to achieve.

However despite my best attempts to do otherwise, sometimes I can get overly worried, or concerned to the point of irrationality or sometimes get socially anxious, occasionally panic, and occasionally think that people are being nasty when actually they're being nice. People think that's weird.

Then I have to decide whether I should explain it to them in detail and risk them not understanding and putting me in the 'weird person with mental health difficulties' category :rolleyes:

Or just try and forget about it and not mention the situation and put it down to stuff I can't do much about.

It's always difficult, but there are lots of people who experience the same thing or worse every day, and I've learned to live with it, see the positives, and try and improve things as much as I can.

Reply 70

sweetnesspink

10

I have chronic health problems (Iritis, Uveitis, CFS and IBS) and you'd never know.

Reply 71

sweetnesspink

10

GapYearGirl

I have ME/CFS but most people just think I'm lazy/anti-social/boring/can't be bothered. But then a lot of people think that's all ME/CFS is anyway so it's often easier for them not to know than for me to get the whole "Why don't you just sleep more?"/"If you just pushed yourself I'm sure you could do it"/"I'm tired and I still come to school" etc. etc. etc.

I have undiagnosed CFS/ME. I have suffered for 8 years since I had glandular fever aged 16. Doctors have tested me for every known disease and I have told them the whole time that I KNOW it's CFS/ME and still 8 years later I don't have a diagnosis. It's very frustrating so I do understand your difficulties. Most people think I'm making it up, especially when I don't have my doctor's backing.

Reply 72

hypocriticaljap

2

I have undiagnosed CFS/ME.

?

Reply 73

sweetnesspink

10

hypocriticaljap

I have undiagnosed CFS/ME.

?

Meaning I KNOW what's wrong with me. But I have only (thus far) encountered doctors who refuse to acknowledge the existence of such an illness.

Thankfully my Mum has just moved GPs and has found her doctor to be extremely supportive of her medical conditions so I'm hoping to move there.

Reply 74

GapYearGirl

7

sweetnesspink

Meaning I KNOW what's wrong with me. But I have only (thus far) encountered doctors who refuse to acknowledge the existence of such an illness.

Whether or not this is true, that attitude will not help you with the majority of doctors. Understandably they don't really appreciate people just assuming they know what's wrong with them. I did encounter one unhelpful doctor who did not believe in CFS/ME, but every other medical professional I have been seen by, even for unrelated problems, has been very supportive.
I assume you have seen a fair few doctors over the past eight years and if all of them have refused to diagnose you with CFS/ME, maybe you don't have it! Have any of them suggested any alternative causes for your symptoms? You might have something similar but actually cureable. Good luck, I hope everything works out for you :smile:

Reply 75

rach00

I also have M.E / CFS. I don't think people would realise unless I told them or they saw me when I was having a really bad day health wise. I am pretty open with it though and feel no need to hide that I have a disability so everyone that knows me knows I am ill even if they don't know much about it.
I have had a few people comment on how tired and pale I look though.

Reply 76

sweetnesspink

10

GapYearGirl

Whether or not this is true, that attitude will not help you with the majority of doctors. Understandably they don't really appreciate people just assuming they know what's wrong with them. I did encounter one unhelpful doctor who did not believe in CFS/ME, but every other medical professional I have been seen by, even for unrelated problems, has been very supportive.
I assume you have seen a fair few doctors over the past eight years and if all of them have refused to diagnose you with CFS/ME, maybe you don't have it! Have any of them suggested any alternative causes for your symptoms? You might have something similar but actually cureable. Good luck, I hope everything works out for you :smile:

I don't tell doctors I know what's wrong with me. I'm not on a suicide mission lol, I'm very well aware that doctors don't like self diagnosing patients. I've never once even suggested I know better than them.

I have seen several doctors but all at the same surgery. The fact is it might be something else, this is true. But I have been tested for pretty much everything under the sun. And I am very in tune with my body. I do a lot of self healing and energy work and I'm almost 100% sure I know what's wrong with me. Although I could have some sort of unknown auto-immune disorder as I have had a few auto-immune problems. One when my immune system destroyed my ovaries and another one which is attacking my eyes/sight.

That being said I know someone who went 12 years before being diagnosed with ME and I know someone who was diagnosed in 4 months. It just depends on the GP.

Reply 77

Titch89

14

I thought it was only specialists who could diagnose ME / CFS?

maybe you don't have it! Have any of them suggested any alternative causes for your symptoms? You might have something similar but actually cureable.

I agree. I have several symptoms of ME / CFS; but my other conditions are the cause of them.

Reply 78

Ice_Queen

17

sweetnesspink

I don't tell doctors I know what's wrong with me. I'm not on a suicide mission lol, I'm very well aware that doctors don't like self diagnosing patients. I've never once even suggested I know better than them.

I have seen several doctors but all at the same surgery. The fact is it might be something else, this is true. But I have been tested for pretty much everything under the sun. And I am very in tune with my body. I do a lot of self healing and energy work and I'm almost 100% sure I know what's wrong with me. Although I could have some sort of unknown auto-immune disorder as I have had a few auto-immune problems. One when my immune system destroyed my ovaries and another one which is attacking my eyes/sight.

That being said I know someone who went 12 years before being diagnosed with ME and I know someone who was diagnosed in 4 months. It just depends on the GP.

Sometimes it isn't that simple.

At the age of 11 I was diagnosed with epilepsy, and told that I would have it for the rest of my life.

At 16, I was told "yeah, you don't have it any more, you can come off the meds now". I fought tooth and nail to stay on them, but it was five to one and I was 16, I was never going to win.

Two years later, I nearly caused a mass pile up while taking my driving exam for the third time. I went to my GP and said "something is wrong". She said "nah, you're just forgetful".

I went to another GP and said "something is wrong". She referred me to a neurologist and I am back on anti-epilepsy medication and nearly have it under control.

Motto of the story: the doctor's aren't always right. You know your body better than they do, and a lot of the time they haven't actually felt it. My doctors have no idea what an absence seizure feels like, so what makes me think that they know best?

Reply 79

Titch89

14

Ice_Queen

Motto of the story: the doctor's aren't always right. You know your body better than they do, and a lot of the time they haven't actually felt it. My doctors have no idea what an absence seizure feels like, so what makes me think that they know best?

I agree. I went to the doctors one time because of ongoing pain (I couldn't move) in my neck. I said "I think it's because I can't hold my head straight; due to my visual problems". My doctor agreed with me - which probably means "I don't think I know what's wrong with you".

I then had a physiotherapist tell me I'm fine - yes, because waking up with a sore neck is normal, isn't it?

My dad has been lucky - he's told his doctor he doesn't want to come off his epilepsy medication for various reasons (he drives for a living) and they've just left it.