How do you find life with an invisible impairment?

Cher_Alumni

This question has been the focus of much TV coverage recently with the airing of a new ITV advert, made in collaboration with Scope, highlighting that just because you can’t see an impairment it doesn’t mean it’s not there.

https://youtu.be/dVitgyLbYyg

What does the ITV ad campaign intend to do?

Starring famous names such as TV personality Katie Piper and The Chase’s Paul Sinha, stars share what many people don’t know about them.  That they are one of 14 million disabled people in the UK, a huge number of whom don’t have an immediately obvious condition.

On this, Sinha says: 

"Ever since my diagnosis with Parkinson's Disease I have noticed how much of the public are only dimly aware of the symptoms, and how much many press outlets deliberately misrepresent. Working with ITV’s Invisible Disabilities is my way of helping redress this."

Invisible impairments on screen

Recently the issue of living with an invisible impairment has been the focus of two separate TV documentaries. 

The first, ITV’s ‘Hidden Disabilities: What’s the truth?’ spoke with various people about their experiences of life with an invisible impairment.  Tackling misconceptions such as ‘only people in wheelchairs are disabled’, the programme sought to confront stigmatised views head on and draw attention to the nuanced ways invisible impairments impact different people.

Whilst the second, BBC’s Sickness and lies looked at the phenomenon of social media influencers with chronic illness being subject to accusations of fakery, most often in cases where conditions were not easily seen by the eye. 

Since airing, the Sickness and lies documentary has received criticism for adding fuel to harmful narratives that disabled people should be treated with suspicion about their legitimacy.  Views further disabling those with invisible impairments who already face barriers to accessing rights and support.  

Read this Disability News Service article, “BBC warned over ‘wildly irresponsible’ documentary on social media ‘fakery’ allegations” for more details.

How do you find life with an invisible impairment?

Many of our members have invisible impairments that affect their everyday living. To read others’ stories and experiences, visit our Invisible impairments category - maybe you can relate?

But today, I wanted to ask:

• Do you have an invisible impairment, and what disabling attitudes and barriers have you come across?  
• What would you most like to tell people who have no insight into your condition?
• Did you watch any of the programmes above, and what did you think?

Leave your comments below and let’s chat.

woodbine

It's really strange being disabled when people can't see your disability, I've got to the point long ago where I have stopped trying to explain to anyone about my epilepsy, it's something that only family and close friends (and people on here, bless you all) know about me and I kind of like it like that.

frightenedautistic

I'm late-diagnosed but I've struggled with ASD all my life, no one knew why things were so hard for me, or why the world was so overwhelming, or why I just didn't understand or took things literally.

I learned to mask and cope with things until it all fell apart last year after I turned 29 and covid happened, I looked back on what I'd struggled to achieve and realised I'd never really felt like "me" just the socially acceptable version of me and an acting role I had to keep up. So many failed jobs, struggles, meltdowns, shutdowns, all the changes outside, by the time I got diagnosed I was barely functioning and still find going outside a massive challenge.

One comment I'm so tired of is "you don't look autistic" and I think that highlights the importance of invisible disabilities because autism doesn't have a way it should look, it was holding it together for so long and trying to be what was expected that led to me doubting myself until everything became too much.

Cher_Alumni

@woodbine I can understand how tiring it gets trying to explain to people what it's like having your condition.  I'm glad you have a tight support network to lean on - having that community you can confide in makes all the difference sometimes.

@Teddybear12 Ahh I'm sorry to hear about your experiences with getting toilet access.  I have had Crohn's Disease for 22 years now (touch wood - it's currently behaving) and I have been through similar, often leading to embarrassing accidents which left me upset and knocked my self esteem.  I do find the Radar key helps but again it's that lack of broader understanding isn't it?  I hope your complaint was followed up on.  

@frightenedautistic Gosh, you've been through so much too.  There is a certain, unspoken, pressure to behave in a way that mirrors social norms and I get how disabled people often assume a public persona to be accepted.  But the toll it takes, like you say on the inside, is a lot.  Do you find your able to be more 'yourself' now?  

OverlyAnxious

Hard...

Although I'm a fairly stereotypical contamination OCD/anxiety sufferer, I'm not a 'cryer' or a 'whiner'.  I manage to keep it all in, as the Beautiful South would say!  Even in the midst of a panic attack, wearing a baggy hoody and large dark glasses, people don't notice, especially in a face mask since covid!  Over the last couple of years I have developed a constant 'shake' though, and I'm very wobbly and unsteady on my feet now and can't stand still without fidgeting and swaying and holding onto things.  I do get some odd looks getting in the car, I'm sure people think I'm drunk!  I feel massively self conscious about it though, despite trying to make light of it if anyone mentions it.

With regards to my other issues, stomach and bowel related...I am amazed how people don't understand them...you'd think it's something everyone has been through at some point even if just from a brief illness or a heavy night out, and would have some understanding of, even if they can't understand the full daily impact, but I just seem to be met with 'well everyone has to go to the loo'...in a patronising tone!

I also find there aren't many reasonable adjustments allowed for MH issues.  Maybe it's just my perception but people seem happy offer a ramp for a wheelchair user.  Whereas I'm just seen as a pain in the backside every time I enquire about anything, this goes for lettings, car sales, medical help, online purchases, etc.  I'm well aware I'm a burden, I have to put up with myself all day every day, I don't think it's unreasonable to ask people to make an alternative option available for an hour or so now and then but just get replies of 'no, we don't do that' each time.  Sadly I can't be flexible with some of my issues, (I wish I could!), so I just end up missing out on things.

Cher_Alumni

@OverlyAnxious I hear you - those throwaway comments, odd looks and unhelpful responses to requests can make it feel like we're the ones with the issue.  That people with invisible impairments should assimilate to expectation, 'put up and shut up'.  But I want you to know, without dismissing your feelings and beliefs, that you truly aren't a burden for asking to have your needs met, for asking for the support you are entitled to and for having a body that is sometimes a bit different to everyone else's.  It's fine for you to just 'be you' so please try not to take responsibility for the barriers and unhelpful attitudes you come across.  I know it's easier said than done.. and I'm likely on my soap box somewhat  .. but it's the external and not people's internal that needs to change.  

Thank you everyone for being so honest about this.  It can be hard to open up but I hope the responses show you aren't alone.

frightenedautistic

@Cher_Scope there really is, it's been a struggle up until this point, especially with work bullying so since my diagnosis back in February it's been like a process of unlearning the persona I had to assume to function in the world and learning how I actually am, without masking and burning myself out.

I stim a lot more now, and I try to mask my struggles less, I have ear defenders, and use an AAC app to communicate when I just can't speak. (The AAC app is wonderful because it means if I ever go back out into the world I won't be called a mute again because I have a voice that can speak for me when I can't). I also removed myself from work and education environments until I can return someday in a better frame of mind. 

Coming from crying every day and not knowing why I wasn't making progress and not remembering to do basic things like eat, I feel I've come a long way, and if I wasn't for my mum being my appointee and recognising where I needed help, I wouldn't be as far along as I am now.

I'm hoping I'll be successful for PIP too, it will make therapy accessible to me because the advice after being diagnosed as an adult is usually "phone the one stop shop for autism" and right now, I feel that therapy will benefit me more to process a lot of the trauma I carry.

Thank you for understanding, it means a lot. 

janer1967

I have both hidden and visible so people notice the visible and think that is if 

I have started taking a white cane out with me so people are aware of vision not that it makes much difference 

rubin16

I have Autism, Schizophrenia and bad crohn's disease with an ileostomy bag, so I struggle all the time when I'm outside. Having crohn's and an ileostomy means I need the toilet alot so always have to plan when going places where a toilet is. I always find people are rude when you use the disabled toilets. I went to the disabled toilet in tesco once and on the way out some elderly lady waiting said "thats the disabled toilet you know, you shouldn't use it". to which I said I was disabled. This is not the only place and found people to be rude in M&S, tesco and other places.

Just becuase you can't physically see a disability doesn't mean there isn't one, and I find alot of rude gestures and things mainly come from elderly people who clearly lack understanding. But it makes me dread going out to places and having to use a public bathroom incase of judgement.

Dragonslayer

I have seen the campaign and it is at least a start. My disability is visual. Hip and back problems, make it hard for me to walk without aid for even a short time. My unseen impairment is my kidney disease, which makes me need to use the toilet much quicker when I need to. I find able bodied people using the disabled ones quite a lot. The last time in a service station one young guy tried to get into a locked one just before me. I went to get the key and when I returned, he had gotten in. He must have broken the lock. When I went in, he had left it in a disgusting condition.
Another unseen one is the loud buzzing in my head. I know it doesn't sound much, but at times I feel I could bang my head against the wall to stop it. It's so hard to tell people how bad and debilitating it can be at times. I have been to ENT, no real result. I have told many doctors at the hospital about it. With no result. They can't understand it, or imagine it and blame it on my Kemo. Maybe it is, I don't know. I am waiting to talk my GP again about it, but I have to wait 3weeks to do this even by phone. I am hoping to go to a tinnitus clinic, but meantime I have gone deaf in my right ear and think I need a hearing aid.