Hidden disabilities

I have Crohn’s and my BMI is over 30. There’s a common misconception that everyone with Crohn’s or Ulcerative Colitis is underweight, but it’s not true. I’ve been given a couple of raised eyebrows recently.

Yanbu at all however I do think the situation isn't helped by bandwagon jumping that appears to go on these days.

There is an obsession with labelling and the rise of the Tik Tok diagnosis. People claiming they have XYZ because they have watched a few videos and it strikes a chord. People who are desperately searching for some miracle explanation of why they feel they are failing when in reality many are just juggling too many plates and struggling with the time/financial demands of modern life. It's exploded since Covid unfortunately. It's awful because the general public then change their perception of certain disorders and don't take them as seriously as they should be. Quite offensive really.

@Notanotherhousepost maybe do some research into neurodivergence, you may then understand more about the person with ADHD can focus if he needs to with strategies that he has learnt over the years. That focus takes a lot of effort and may be mentally and physically draining for them, so they may be able to do it when needed, but it isn't sustainable for a long period of time. Over the years he has learnt when he needs to put in that effort and when he is better using his energy and effort in a better way. ADHD/ADD (attention deficit disorder without the hyperactivity) can impact people in different ways, so you may meet two people with the same condition and they will be capable/struggle with different things. A reasonable adjustment, which is what someone is entitled to, could work in many different ways, but for example allowing more time for a job to be completed is a reasonable one, and would allow someone to take the breaks they need to recover from the extra effort they have to put in, Other neurodivergent conditions such as dyslexia etc are often (not always) accompanied by things such as a poor short term working memory -give them a list and by the time you have got to the end they have forgotten the start, (it doesn't have to be a long list either). Even though there is dyslexia in the family, until knowing what my daughter experiences I didn't fully understand the other issues it causes - other than the obvious issues with reading and spelling,

I suffer from ME/CFS, Fibromyalgia, Hypothyroidism, Vitamin B12 Deficiency, Peripheral Neuropathy, Osteoarthritis, Anxiety, Depression, PTSD, Autism, ADHD. Because I don't have any limbs missing or use a wheelchair 100% of the time I get told "you don't look disabled" or in the case of the DWP aren't "disabled enough".

I'd love to not pay attention to boring stuff but thats life.

I know someone with an official ADHD diagnosis from 20 years ago, by the way, and even he says "of he really wants to he can focus using strategies he's learnt over the years but its so much easier not to unless he has to."

Its difficult I know but I don't believe its as common as made out just poor attention span.... and I have developed exactly that due to modern life, scrolling and the internet.

Hearing impaired.
People are incredibly rude and annoyed by it.

I don't put up with it anymore. I will turn my hearing aids off and blank them.

@Notanotherhousepost You couldn't be more wrong...

Hyperfocus is a symptom of ADHD.

There is institutional disability discrimination which is at epidemic proportions. My battle with Access to work has been ridiculous. I have an appeal in, and that comes after a 6 month wait just for an appointment with an assessor. They don't disbelieve that I have many serious conditions and many staff have commented that they are surprised I even try to work. However, the system is set up to make applicants fail, and staff don't even follow their own decision making handbook. This is just one example.

I have bipolar II, OCD, SAD, GAD, PCOS and migraines with aura (lose feeling in limbs on one side and speech affected). I don't disclose at work at all after being directly discriminated against several years ago.

I work remotely and don't mind telling my manager that I'm going to bed for an hour and will make up the time for a migraine, but could never disclose mental health stuff again.

I just work through symptoms.

Also, I haven't told the majority of friends my diagnosis. If I say I'm 'not in the mood' for something they tell me I 'need to drag myself out' so I just say I'm working (usually true) which they accept.

Also scored 0 points when I applied for PIP in 2020 despite years of medical evidence.

@Theemeperorsnewclothes no but I've done a lot of research on my own. Daughter has an ehcp and is getting the support she needs, plus she has me fighting her corner.
I'm afraid, I'm the kind of person that helps everyone else before thinking of my own issues.
I also have my husband off work, he has had an operation on his knee, Been off since Jan, so there's a bit of stress there. We had to apply for UC and we are currently not sure he will be able to return to work, as his knee doesn't seem to be getting any better.

I have a sleep disorder which causes me to be chronically fatigued due to interrupted sleep cycles. I was on a training course the other day and during the powerpoint there was a slide that very explicitly said "the responsibility to ensure you are fit to drive is on you", yet when I've declared my health status and how it impacts my cognitive function/reaction times, etc, it's being purposely ignored as it would mean I would have to be redeployed into another role. Oh, and my whole employment is on the line if I take any more sick leave due to their lack of support!

I have adhd diagnosed and heavily medicated yet by reading the threads on here I'm just a knobhead drug addict apparently

I completely agree. DH had a relative with bi polar/depression. She came to a family BBQ and was sat being chatty. When she left some of the in laws sat and ripped her to shreds about how she couldn't possibly be depressed because she wouldn't have sat there laughing and chatting and bipolar is just attention seeking.
She committed suicide not long after, in the most horrific way. I'll never forget it.
The same people roll their eyes at anybody saying they are in chronic pain or have anything that can't be seen. It's the reason I will never tell them if I have a medical problem. They are very much 'its all bullshit, just get on with it' people.

Yep. My own siblings are convinced I'm lazy, scamming & not trying hard enough. It's unclear why they think I've chosen to live in chaos and poverty - they must think I'm really bad at scamming & shirking!

It's proving near impossible to get the help I need, too. Despite improved wording, the 'needs' questionnaires are all geared to a list of narrowly-defined, continuous physical incapacities.

Yep. Hashimotos, neutropenic, hidradenitis supprativa, chronic urticaria...

Yanbu.
I see this every day, both with myself and my daughter.
I have fibromyaglia, hypothyroidism, a large hernia, now possible diabetes and perimenopause.
My daughter has learning disabilities and autism.
But of course we both look fine.
No one gets that stress tends to spark my flare ups and fatigue sometimes is so bad I can't make it out of bed.
They assume I'm just lazy. Before this illness I was on the go all the time, working, keeping a house running, enjoying life. Now I can't work, doing the housework takes me most of the day because I have to keep resting. It's soul destroying, it makes you feel depressed.

The lack of awareness and accommodation of hidden disabilities is awful. So's the lack of accommodation of visible disabilities. I should know, I have 7 hidden disabilities and 2 that cause me to use a wheelchair/ have visible neurological issues. I actually find it harder to get things made accessible for the wheelchair part. Even though people can see it, the impact of things not being accessible are often things I can't mitigate myself. e.g. environment is too loud for my autistic brain, I can wear ear defenders. No ramp to get in - nothing I can do about it. I also have problems with people understanding what "wheelchair accessible" actually means - I've taken to saying "step-free access", due to the number of times I've been told "oh it's on the ground floor" only to find steps.

Having hidden disabilities can be really hard to deal with, especially when people don't believe you. But some people also don't believe I need my wheelchair. The problem with these types of threads is that someone invariably says "well you wouldn't deny a ramp to a wheelchair user so you shouldn't deny accommodations for xyz hidden disability". Except that's not true, because wheelchair users are denied access and discriminated against all the time. I don't necessarily think it's helpful to pit one type of disability against another; we all need things to be made accessible to us and for attitudes to improve.