By Alipinkandgreen.com (May 2025)
I've been meaning to write an article about invisible Illnesses and disabilities for quite literally years but focus definitely isn't my strong point. Still, we got there in the end. In truth, I'm glad it waited because a few more years of experience of being a disabled person and seeing how vastly differently, and often absurdly, people see you and imagine your challenges has actually made me view it through a very different lens.
Of course, examples of possible hidden illnesses could be chronic fatigue, depression, anxiety, dyslexia, autism, colitis, crohns, arthritis and a gazillion other things to fit the definition of physically invisible to an observer. As a wheelchair user with movement issues on the other hand, it's fairly difficult to argue that I don't have some problems that can be very clearly seen, even if your eyesight is bad. There are a couple of issues with that. The first is that it's a fine example of the limitations of the binary thinking of humans. You are either Team Visible or Team Invisible. But I have both visible and invisible stuff going on. The chronic fatigue can't be seen but I'd argue is at least as physically debilitating as the lack of interest (by many, thankfully not all) in improving access for wheelchair users in this crazy country. If there were numerous places to go, I wouldn't suddenly have boundless energy, more’s the pity, even taking motivation into account. I wouldn't not have multiple sensory overloading, either. I'd also argue that as someone who has struggled with depression for most of my life, at its peak (or trough, depending on how you want to look at it) it's been more life threatening than anything else I've had, including Cancer. That said, what I'm not trying to do is play Top Trumps with the community who have exclusively invisible issues, because I think they're experiencing discrimination of an entirely different and certainly no less valid nature. They are likely to fall foul of the regular assumption that they look fine so there's nothing wrong with them. Or perhaps that they're pretending for attention or free money, but they still must be fine because they look fine by that person's definition. Either way, intentional or not, this leaves swathes of people disbelieved and unsupported and voiceless, when put bluntly, they've likely got issues they could use help with.
This really matters, because often those invisible issues need treating with urgency, and there really isn't time to debate the legitimacy of that person's presentation. Someone with social anxiety surely deserves the peace of mind that they can use their prescribed cannabis without having to educate venue holders, just as someone with crohns or urinary incontinence deserves to be able to use a disabled loo without some dickhead informing them they can still walk, so they're not disabled enough. People with dyslexia are not stupid compared to anyone else but I get the sense from many people I've encountered who are diagnosed with it that they've been consistently made to feel it, possibly to the point where they came to believe it themselves. I've always been blessed with good grammar and spelling but if you're rubbish at communicating, they're of limited use. Intelligence is not actually measured or measurable in many regards anyway, but a tendency to value academic ability over common sense likely dooms this demographic to the snobbery they may have to endure. We're told ignorance is no defence in the eyes of the law, but that's a tricky one, because it feels like it's all some people are likely to have to work with.
The reason I titled the article as I did is that change in lens I mentioned earlier. I'm continually amazed by people's misconceptions about physical disabilities. That we can't talk. That we can't think. That we're all incontinent. That we've always been disabled. My personal favourite is still the taxi driver who told me that me and hospital services have got me the wrong type of wheelchair. Because his lack of experience apparently didn't preclude him from being the more intelligent or knowledgeable on the subject. It's actually this particular one that led me to pondering whether there is more crossover in the visible invisible arena than I previously realised. After all, in any exchange of interpersonal communication we can rarely, if ever, receive information entirely as it is intended. Our brain, experience, ways of communicating and other factors are all so very different. So what we think we've communicated, demonstratively, verbally, written etc. and what was received, and vice versa are inevitably different. We think we've communicated our needs or issues clearly but there will always be cases where we've not been even slightly successful.
So what does communication barriers have to do with anything? Well, even if someone can see there's something wrong with me, their preconceptions may be so strong that nothing I can say or do will dissuade them that they don't still have a better idea of disability, or more accurately, my own experience of it than I do, after 11 years of living the dream. And if you're being misseen to such an extensive degree, are your issues actually being seen in any more meaningful way than those with invisible ones? I'd argue not, but the outcome is not dissimilar in terms of you're not disbelieved as a feigner, but you're told you're doing things wrong, routinely, by self appointed experts, and your verbal and written protestations and attempts at reason rarely resolve much. You too are essentially left voiceless.
Everyone, irrespective of health, is now constantly subjected to unprecedented types of external stressors, in a technology obsessed world that gives us no choice (in whether we wish to adopt it), no training (in how to use it) and no flexibility (in how it might work in a way our unique brains understand). But our rationale that we can't do something outside our skill set, however aggressive the reminder, will rarely be heeded in many walks of life. So the emails keep coming, along with the information you apparently need to know but can't understand. The number of times I've explained I cannot compute complicated information or deal with verbal exchanges on the telephone has made a sparse difference to the methods people use to communicate with me. Their previous assessments rarely stop them expecting me to go through it all again each time. In the world of capitalism, absolutely everything requires a password which we're told should be different each time, and if you can navigate the blind fury of not talking to an actual person when you actually need one, your jedi concentration will probably be scuppered by an advert anyway. Or it crashes. I couldn't have dealt with that before a neuro disorder and I definitely can't now. Not many other people can, but there's still the assumption that they can. Or perhaps just that they're going to have to.
So in conclusion, I suppose the takeouts from this are that it's not just what the eyes are seeing and how they're seeing it, but what the mind’s seeing, and how it's interpreting it. But visible or invisible, it's clear that anyone suffering from any type of chronic ailment is likely to be dealing with some level of discrimination to some degree that they could likely do without. I tend to view any ‘How Are We Doing? surveys as a cynical waste of my time and indicative of a kneejerk reaction to knowing that their service is in fact fairly rubbish, rather than a will to improve it. In fairness, I don't think the NHS even bothers trying in this regard now but as this is very clearly a health issue as well as an educational and societal one, I can't help but think that unless they actually move towards patient-centred care and actually listening (as opposed to very occasionally pretending you are), the problems will remain static and unaddressed. Patients' and sufferers' voices are the only way of even beginning to address the misconceptions about illness, surely. That's where the premise of our health education still primarily stems from, after all. I've met and still meet with clinicians who do listen, but that doesn't mean there haven't ever been misunderstandings or that I've never felt discriminated against by them at times, even if it was unintentional. Or simply not heard. And for those people who don't seem to listen at all, it feels like wasted energy trying to explain. Much advice towards progress seems reliant on the sufferers, for want of a more preferable term, explaining to people in quite a lot of detail, often, about their illness or disability so as to better educate others. Much as I hate most of what the Internet offers, it does have tons of information for those wishing to educate themselves by people, including myself. But when I'm out of the house, my time and what I do with it is reserved for activities, none of which include talking to strangers about my health issues. In fact, my most consistent activity is avoiding eye contact and trying to avoid them altogether. Our society needs a big injection of compassion right now. We need to shout and judge less and listen more. Well, some of us might still need to shout.