Visible Vs Invisible Disability And Chronic Illness

Today, I want to address a topic that I’ve seen pop up quite a bit recently and in all honesty, it’s made my blood boil. It’s taken every ounce of my being not to join a conversation or leave a comment telling people how unhelpful and (in my opinion, wrong) their statements are. The topic in question? Which is ‘worse’, visible vs invisible disability and/or chronic illness. If you know me, you’ll probably know where I’m going with this – neither are better or worse! They both have their different challenges, so people need to stop with the comparison already! Grr…

transitional outfit, visible vs invisible disability

Dressing Up Light Blue Denim, wheelchair fashion

I’ve seen these type of comments from both visibly disabled and chronically ill people, as well as those who’s conditions and/or impairments are invisible. To demonstrate that neither is better or worse and that they each have their challenges, I thought I’d share some situations and explain the difficulties often experienced by those with visible vs invisible disability and chronic illness. I feel like I’m in a fairly unique position to be able to comment on this, having gone from being invisible to visible. Well, I say invisible, but I’ve worn precision tinted lenses since I was 14, but most people think they’re ‘just’ sunglasses.

Visible Vs Invisible Disability And Chronic Illness

Visible Vs Invisible Disability And Chronic Illness: Out And About – Physical Aspects

A big frustration for me as a wheelchair user, is the lack of consideration in accessibility. Both in terms of design and people’s lack of thought. I regularly come across dropped curbs that someone has blocked by parking over and it sucks. In some places this means that I’m forced to travel on the road which isn’t safe. Think those with invisible disabilities and chronic illnesses don’t have physical barriers? Think again!

I’m photosensitive, which affects basilar type and hemiplegic migraine, this isn’t something people would know just from looking at me (unless they know what precision tinted lenses are). Fluorescent lights are a significant problem for me, yet they’re the most common forms of lighting used in schools, hospitals, shops, doctors surgeries and more! The wrong type of lighting prevents me from accessing a space as much as the lack of a ramp does.

Center Parcs Woburn Accessibility, targeted by a devotee, back to the factory, choosing a wheelchair, days out as a wheelchair user, Accessibility Is Different For Everyone, Visible Vs Invisible Disability And Chronic Illness

Visible Vs Invisible Disability And Chronic Illness: Out And About – Social Aspects

When you’re visibly disabled and/or chronically ill, you’d think that people would be more understanding of your limitations, because they can see them. And to a large extent, this is true. I’ve never had someone refuse to open a door for me when I’ve been out in my wheelchair. But, I’ve found that people go to extremes to be ‘helpful’ when it just isn’t needed. Over the summer, I had a woman get off at my bus stop. She asked me where I was going in town and proceeded to go with me to my destination, pressing all the pedestrian crossing buttons for me. It was bizarre! This was ‘help’ that I really didn’t need. While her intentions were good, it was really patronising and made me feel more disabled than I am.

When you’re invisibly disabled and/or chronically ill, being out and about provides many challenges. One of the biggest I found was the judgment of strangers. Use the disabled toilet or parking? Get disapproving looks and verbal abuse. Need a seat on the train or bus? Good luck getting someone to get up for you. Walk a little slower than the crowd or take longer putting money in your purse at a cash register? More disapproving looks and inappropriate comments. People assume because they can’t see your impairment or condition that you have no difficulties performing every day tasks and that you’re just been awkward. The reality is that this couldn’t be further from the truth.

Cold Shoulder Strappy Jumper

Visible Vs Invisible Disability And Chronic Illness: Attitudes Of Strangers

Really, an extension of my point above. Because if the attitudes of strangers weren’t a problem, being out and about would hold fewer frustrations for both visibly and invisibly disabled and chronically ill people.

I’ve been shocked at the number of strangers who come up to me and ask really personal questions since I’ve become visibly disabled. This is something that didn’t use to happen when my conditions were (largely) invisible. I’ve also had people give me pitying looks.

However, when I was invisible, no one asked me if I needed any help. Even when I was visibly struggling. And on the rare occasions when I asked for help with something, I’d often be made to feel an inconvenience, because people couldn’t see my difficulties.

Metaphorical Coffee, Visible Vs Invisible Disability And Chronic Illness

Visible Vs Invisible Disability And Chronic Illness: Accommodations

In terms of accommodations, with both visible and invisible disabilities and chronic illness, there is far from enough being done. I’ve had to fight hard for accommodations for both my visible and invisible difficulties.

You may remember the difficulties I had with the council leaving the bins blocking access to my house, despite me telling them several times that I’m a wheelchair user and the path needs to be kept clear. You can find more about this in my Why Are The Council Blocking Disabled Access To My House With Bins? post.

You may also know that I have oesophageal dysmotility, which is invisible. As I can’t eat large amounts because of this, I need to have a child’s portion when we go out to eat. Yet, I’ve been made to explain myself, in public, when doing so. And not just explain myself. I’ve been forced to argue that it’s a legal requirement for me to be accommodated in this way before, because staff argued with me. This was a horrible experience that left me close to tears, made worse because it all happened in public.

These aren’t the only accommodations I’ve had to fight for, but we’d be here all day if I went into them all. I feel like the important thing here is to demonstrate that those with visible and invisible disabilities and chronic illnesses have to fight just as hard as each other to get the accommodations they need.

Council Blocking Disabled Access, Accessibility Is Different For Everyone, Visible Vs Invisible Disability

Visible Vs Invisible Disability And Chronic Illness: Not Fitting The Stereotype

Many of us, visible and invisible, come across difficulties because we don’t fit the stereotype people have in their minds. Stand up from your wheelchair and you risk glares and accusations that you’re faking. Have a variable condition that fluctuates? Some people will assume you’re exaggerating when you use an aid and miraculously better when you don’t. Invisibly disabled or chronically ill? People (particularly strangers) don’t consider that you might be less able to do certain things or need a little help. They assume that you’re ‘healthy’.

When out on my mobility scooter, I’ve had comments about me being ‘too young’ to need it. Like chronic illness and disability is only something that happens to older people. I’ve also received comments about my precision tinted glasses. Things like “It’s not sunny in here!” Well, duh! As a teenager, this was quite intimidating, as it usually came from groups of men. I got a lot of comments when I was in retail. I’d explain that they aren’t sunglasses and that I’m photosensitive (because I couldn’t say what I really wanted to) but somehow I ended up being made to feel guilty!

#SelfLoveChallenge13, Visible Vs Invisible Disability And Chronic Illness

Visible Vs Invisible Disability And Chronic Illness: The Comparisons

Too many comparison’s are made in regards to visible vs invisible disability and chronic illness. And, from what I’ve seen, they’re always wrong. I’ve seen people talking about things people wouldn’t say to a wheelchair user, yet half of the things they’re mentioning I’ve had said or done to me while using my wheelchair! Which completely dismisses wheelchair user’s experiences. And how would a non-wheelchair user know if these things are or aren’t said!? They can’t!

I’ve also seen comparisons made about restaurants making accommodations for people with dietary requirements, but not for those with physical difficulties. If I’m honest, this comparison really upset me. Yes, more need’s to be done to make restaurants physically accessible, but a lot needs to be done to make them accessible for those with special dietary requirements too!

The number of times I’ve had food put in front of me that could kill me, despite providing the kitchen with a detailed allergy list, is terrifying. And you’d be shocked at how few restaurant staff understand the difference between wheat-free and gluten-free. As a result, we rarely go out to eat. And when we do, we have a few select places that we frequent. Places that we know are fairly safe, though we do still encounter problems. I personally, am prevented from going out to eat more by my allergies than my physical restrictions. So to see this comparison, and the lack of understanding, is upsetting and harmful.

JORD Wood Watch, Accessibility Is Different For Everyone, Visible Vs Invisible Disability And Chronic Illness

Visible Vs Invisible Disability And Chronic Illness: What Should We Do?

I strongly believe that we can campaign and raise awareness of the difficulties visibly and invisibly chronically ill and disabled people face without adding to the stigma that another group faces. We need to stop making comparisons between groups. Particularly when we don’t have experiences to back up what we’re saying.

If your advocacy is at the expense of another group, you aren’t being inclusive and are actively harming other disabled and chronically ill people. So please, be considerate of others. Let’s stop the comparisons between mental health and physical, between visible disability and invisible, and between visible and invisible chronic illness. There really is no need for it. We’re all affected differently and we’re all treated badly, just sometimes in different ways. That doesn’t mean we’re any less or more affected.

Please feel free to share any difficulties you’ve faced as someone who is visible or invisible. But, let’s avoid making comparisons of visible vs invisible disability and chronic illness, because it really is harmful to people in both groups.

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Visible Vs Invisible Disability And Chronic Illness

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Tania Jayne

  • I hope this comment doesn’t come across as too harsh. But, this type of comparison is something I have little time for. IMO there’s absolutely no need for it. Disability and chronic illness are not a competition. I hate when I see someone put down or
    minimise someone else’s struggle by saying they have it worse. I don’t understand the thought process of “someone has it worse than you therefore your experience/view is invalid”. There doesn’t need to be this kind of division.

    And, while I can understand the frustration of why someone might say that they wish their invisible illness was visible if they are having a bad day and feel like no one understand, i feel this is said without really thinking things through. As, again, it is minimising the difficulties people with a visible illness face.

    • No, I don’t think it comes across as harsh at all Donna, I think you’ve summed up my feelings perfectly! I was worried that people would be upset by this post, but I felt it so important that it needed to be said. I really wish people understood how their comparisons, while said in frustration for their own situation and people’s lack of understanding, have a negative impact on others. Thank you so much for your support and your reassuring comment. Xx

  • GAH! I hate comparison like this. As Donna says, it doesn’t help and it creates difficulties for everyone. Disabilities are hard to live with, for so many reasons regardless of it is invisible or visible. A much needed article, and very well written too.

  • I really loved reading this Tania and think there are so many important points you’ve raised! I think your comment ‘If your advocacy is at the expense of another group, you aren’t being inclusive’ is what resonated with me the most. I am abled, but I feel like this applies to so many other issues as well as the ones you’ve highlighted. I still question why anyone would feel the need to help you cross roads without asking first – it’s ridiculous the things people think are helpful!

  • Jenny

    Yes yes yes to everything. The light sensitivity is so bad at the moment I’m using a blindfold and getting people to guide me in certain places and the difference between this and using tinted glasses is amazing. I’ve had people tell me I was brave for walking places by myself and the assistance staff in the airport asking my companion “does she have anything in her pockets” instead of asking me. I try and argue but a lot of the time if I did this this would delay me getting out of the bad lighting situation so I can’t because I just need to get out of there as soon as possible.