On the way home from my weekly work shift, when I was still well enough to work, I was always exhausted – and often shaking and sweating. I would take the metro, on a very busy line, and would often end up standing the entire way home, despite knowing that I might pass out at any time. Why? Because I was too scared to ask someone for a seat.
Once, when I was nearly passing out on a bus, my partner asked someone if they would mind giving up their seat for me. They yelled at me that when I was as old as they were, then I could have their seat. So, we had to get off, and wait for another bus… because they did not believe I was disabled.
Another time on a bus, my partner (who at the time had a broken hip) and I were quite rightfully sitting in the disabled seats, when an old lady got on. She proceeded to shout at us for being selfish.
In the airport at Schiphol (before I used a wheelchair), I used to have to either pretend I was a wheelchair user, or go through the normal queue because – according to the criteria from the accessibility help desk – you are either completely healthy or you use a mobility aid. So, I would make myself sick because I wasn’t a wheelchair user.
Even when my partner carries my bags through the streets, I often receive dirty glares from people who clearly think I am some sort of spoilt princess. They don’t see and they don’t know that I am focusing all of my energy on putting one foot in front of the other, and absolutely could not take the weight of a bag on top of that.
I could go on and on. The fact is, alongside something like 80% of disabled people, I have an invisible disability, and until recently I was one of the 98% of disabled people who was not a wheelchair user. And people with invisible disabilities are very often assumed to be healthy and not disabled.
This is only exacerbated by a lack of representation of people with invisible disabilities and, in the case of this post, more specifically invisible illnesses. When we think of ‘disabled’, we generally think of someone with a visible illness, because that is what is represented to us as disabled. And with this lack of invisible disability awareness comes a whole host of experiences that are uncomfortable and difficult to navigate.
Unrealistic expectations
Because to the untrained eye I look healthy, people often forget that I am actually sick. This often results in unrealistic expectations of my ability, even from people who know I am sick. I think it is probably easier to forget that someone is sick if you haven’t seen them at their worst, and they mostly pretend to be healthy. But it means that I often cannot live up to the expectations placed on me in both daily tasks and longer-term projects. This is unsurprising, given the restrictions placed on me by my disability, but it often means I feel like a failure or a disappointment, and end up being perceived as unreliable or weak, when in reality people have placed unrealistic expectations on me, that I could never fulfil.
Proving my disability
I have talked about this before, but when you have an invisible illness, there is a constant need to remind people that you are sick, and to ‘come out’ as disabled. This means that many people with invisible illnesses feel as if we spend our lives trying to prove that we are sick.
One of the things that I find incredibly uncomfortable is telling people that I am too sick to work. Because invariably, on a day that I am out and well enough to meet someone new, I look like a healthy person in their twenties – so I feel as if I really have to justify myself to them – that I am not lazy, but genuinely too sick to work.
This extends to talking with medical professionals, benefits assessors, employers, etc., which can be incredibly harmful. I see stories daily from people saying that their medical notes, or the notes from their benefits interview contain phrases such as ‘does not seem to be in pain’. Often, this is because people are not taught how to observe the common visual clues indicating pain, and they do not realise how effectively people with invisible illnesses become at hiding their discomfort and pain. It also ignores the power of basic make-up!
The result of this is that many people have to fight really hard to prove that they are sick and need medical attention, pain medication, etc., and they have to fight for the correct diagnosis and for the accommodations and benefits that they may be asking for. Often, they are denied the things they need because they are disbelieved and, in the eyes of the observer, haven’t adequately proved their disability.
Asking for help
Interestingly, many wheelchair users and people with visible disabilities struggle with the assumption that they must need help, because people perceive disability as inability. For me, with an invisible illness, it is quite the other way; I often wish that people would realise and see how sick I am, so that when I ask for help they will believe I actually need it – or even offer me a seat on the bus without my asking.
I have found that I would rather not ask strangers for help, because of the treatment that will invariably follow, inferring I am lazy or selfish. Either that or I have to launch into a long explanation of my illness, which sometimes I am happy to do, but at other times, I just want someone to lift my bag down from the overhead lockers, without needing chapter and verse about why! Of course, this doesn’t happen every time, but it has happened often enough to have made me wary of asking for help.
Harassment
Unfortunately, many people with invisible illnesses face harassment of different sorts when they use the services specifically intended for them, as disabled people. As I mentioned above, the disabled seat on the bus is a very common example of this, but I have also seen people harassed or having their car vandalised because they have parked in a disabled parking space whilst not visibly being disabled.
There is also a huge judgement on people using disabled toilets when they look non-disabled but, as a common example, you cannot see a stoma, yet people with stomas need access to disabled toilets and are often judged for using them. Sadly, it is perhaps well-meaning people who make these calls, thinking they are helping ‘real’ disabled people, but they absolutely do not realise the wide range of disabilities that exist, nor the suffering they are inflicting.
Invisible disability awareness
I think a lot of this invisibility is caused by a complete lack of representation and awareness of invisible illnesses and their existence. Because, in reality, many so-called invisible illnesses are not really invisible at all: when I am uncontrollably shaking, or sweating profusely just from standing up, it is highly visible; when I have a migraine, my entire face swells up and you can see a vein in my head throbbing; people with disabilities like lupus and MCAS get a variety of rashes. There are all sorts of indications that render many invisible illnesses visible – but people are just not taught see them, nor even really made aware that these disabilities exist.
Invisible disability awareness schemes
In comparison with the Netherlands, I feel that there is finally some recognition in the UK that not all disabilities are visible. On many signs for disabled toilets and seats, there is a little reminder that not all disabilities are visible, and whilst I’m not sure this has yet had a huge impact, in itself it is hugely validating, and gives me increased confidence to claim the accommodations I need.
The sunflower lanyard scheme, also a UK-based initiative, has been hugely beneficial to me. For those who don’t know, people with invisible disabilities can wear a sunflower lanyard, which is recognised in many shops and in all British airports, and which indicates to staff (and other people), that they are disabled and may need extra help. As someone who, before Covid, flew frequently between my family in the UK and my home in the Netherlands, this has been a life saver for me. I no longer have to make myself incredibly sick standing waiting in the queue. I can just wear my sunflower lanyard and get the accommodations I need to fly, without causing myself unnecessary sickness. And it has been a way of visibilising something which, to many, is invisible.
But there is still a long way to go. Representation of invisible illnesses, and education about disability needs and accommodations is still woefully lacking. We still associate disability with one specific group of disabled people instead of realising the wide range of disabilities – many of which remain hidden through shame and lack of awareness. And this means that many of us, myself sometimes still included, make snap judgements and assumptions about people’s abilities which can be wrong – and variously damaging.
It is so important to carry on making changes to representation, talking about invisible illnesses and disabilities, and validating their existence – and, on an individual level, remembering to treat people with kindness and respect. At the end of the day, we don’t ever truly know what another person is experiencing, and it could well be that the healthy-looking person in front of you, is not as healthy as you have assumed.
Just a little note…
I just wanted to write here that I have used the words invisible illness and invisible disability interchangeably in this article. Although they might seem to be the same thing they are not really. Invisible illness as a category has some very specific things that not all invisible disabilities have. Whilst it was invisible disability awareness week last week I am speaking from my experience here having an invisible illness.
