Chronically Ill Kat

I recently decided to start using a wheelchair. This is a really big thing for me. For the past several years I have been running away from the fact that a wheelchair would be useful, but thinking about it constantly. In fact, I’m sure my close friends are quite bored with being asked if they can push my chair at certain events, only to find that, yet again, I have decided to turn up with no chair and make myself sicker – or not turn up at all. If any of you are reading this, thanks for your patience!! It’s ridiculous to think that I have been so indecisive about using what is essentially a chair on wheels, but there is so much that comes along with using a wheelchair, especially as a young person with an otherwise invisible illness. It is really no wonder I was anxious.

My first experience in a wheelchair

My first experience in a wheelchair was some years ago, on the way to Sri Lanka. When I travel abroad, I inevitably use the cheapest flight, which often means silly layovers at silly times. On one such flight, I had a 45-minute layover in Oman, which isn’t really enough time, even with the best will in the world, so we decided to book special assistance to get through everything. This meant that the very first time I sat in a wheelchair was when a very taciturn and grumpy porter, loaded me into an airport wheelchair and set off running through the busy hallways, with people staring from every which direction.

This was a horrendous experience for several reasons: the speed of transit, the stress, the fact that everyone stared, and also because he talked only to my partner and completely ignored me. All these things made me feel like baggage being transferred from plane to plane. Luckily, we made the flight, but I felt awful, and it gave me such bad associations when I thought about using a wheelchair. For the next few years, every time I thought about being in a wheelchair, I remembered the feelings created by this ride and made a thousand excuses not to recreate them.

Visibilising the invisible

The thing with having an invisible illness is that you can pass as healthy most of the time. Don’t get me wrong, I have spent a lot of time wishing that wasn’t the case, particularly when old ladies have been yelling at me in Dutch about sitting on the disabled seat in the bus. But most of the time this means that I avoid a lot of the interest and stigma that come as a result of being disabled. As far as anyone knows, I am healthy and fit. I’m even wearing sports clothing!

Using a wheelchair removes this ability to pass myself off as healthy, and this is something I’ve been afraid of. As I’ve said before, a very common emotion for people to feel when they see a young, disabled person is pity, and it is always clear to see when someone is pitying you. This, for me, was a huge barrier to using a wheelchair because I was terrified people would treat me with pity, and perceive me through the lens of being disabled, rather than through the lens of being me. There is so much stigma and miseducation about disability that being obviously disabled is something that has really scared me.

The feeling clearly comes from internalised ableism and is something that has taken me several years to unpick and face head on, but since spending more time in the chronic illness community and seeing the way in which people talk about their mobility aids, I have begun to see the upsides to having a mobility aid, and these have begun to outweigh the potential ableist perceptions of strangers.

Wheelchair representation 

Common perceptions around wheelchair users meant that, for many years, I did not even consider that using a wheelchair was a possibility. Like many people, I assumed that wheelchair users cannot walk at all – because this is the common representation of a wheelchair user. It is someone who is trapped in their wheelchair prison and dreaming of escape. A prime example of this is the character Artie from Glee. But every Facebook video of a wheelchair user, walking for the first time, reinforces this narrative. And, of course, many wheelchair users cannot walk.

However, what is often missed, is that there are many, many wheelchair users who are also able to walk a little bit – or even a lot on some days. It is only when I saw this very different representation, within the chronic illness communities online, that I realised a wheelchair was an option for me. Having seen many people, in similar positions to mine, benefiting from wheelchair use, I began to feel my imposter feelings dissipating enough to feel I could use a wheelchair.

Even so, it is something that makes me nervous. Many of my friends, who are ambulatory wheelchair users, have had people commenting or asking them questions when they have stood up from a wheelchair – as if this is somehow breaking the rules. As a result, they have been forced to justify their wheelchair use to a complete stranger in a cafe or shop, who realistically has no entitlement to their medical history and should not be passing judgement on whether or not they choose to use a wheelchair. The possibility that this would happen to me has worried me a great deal and has persuaded to avoid the whole wheelchair ‘thing’ altogether.

That said, I have spent the last month celebrating disability pride, and learning and reading about it, and I have begun to feel I am ready to educate people without feeling unduly uncomfortable. However, the process of gaining this confidence has been hampered by my anxiety about potentially awkward interactions with passers-by – rendering it much more stressful than it should have been.

Admitting how sick I am

Living with an invisible illness, or a sickness that is not well known means many of us have spent years having to prove that we are sick, whilst being repeatedly told we are not. We don’t look sick and seldom get treated like sick people, despite our sickness being only too real. What that has meant for me is that I constantly question how sick I am and whether I am sick enough to deserve or qualify for certain things. On days when I am feeling better, such as today, I feel a lot of guilt about not working – even though my good days are probably worse than many able-bodied people’s sick days – so, when it comes to using a wheelchair, I therefore question whether I am sick enough to use one, or am I just over-exaggerating my illness, and being lazy?

Because of this gaslighting, I have also spent many years not fully admitting to myself how sick I am. I have not been confident enough to trust my perception of my own sickness and have, instead, pretended to myself and others that I am healthier than I am. This means that accepting I might be sick enough to benefit from a wheelchair has been really difficult. It feels as if I am accepting a new level of sickness – even though, in reality, nothing has changed except my acceptance of my condition and of the help I need as a result.

Last year, I got the offer of a very good quality mobility scooter, but I turned it down because I didn’t want to admit to myself that I was sick enough to benefit from it. I secretly knew it was silly but, at the time, the level of acknowledgement it required me to make about my sickness was too much. Of course, now that I want to use a wheelchair and know the price tag that comes with a good one – never mind a mobility scooter – I am kicking myself!!

Giving up on myself

Very much relating to the last point, I was recommended Graded Exercise Therapy (GET), in the past, and still (unfortunately) see it advertised all over the place as a cure for chronic fatigue syndrome/ME. Whilst I know the science behind this is not well supported, the discourse on deconditioning has stuck with me. One of my biggest fears was that, by getting a wheelchair, I would become lazy and my condition would worsen. I felt it would be hard to judge how much or how little exercise I should do. In reality, this is not a problem, because I still use all my energy, every day. It just means I don’t have to spend as much of it on boring things, like grocery shopping, and can use it doing something I actually want to do, instead.

What I have felt, however, is that the choice to use a wheelchair seems very final – as if, I am fully identifying as disabled, and have given up on myself and on my dreams of getting better. This feeling could not be further from the truth and, after serious reflection, I realised that it was almost the other way around: by not using a wheelchair, I was giving up on myself because I was letting my fears stand in the way of the freedom that a wheelchair brings, and the ability to do so much more – which, of course, is about not giving up on myself, and making sure I put my wellbeing first, even if at first it seems challenging.

What changed my mind?

All these issues have been playing in my head for several years – years during which I have gradually stopped visiting places, such as museums and bars, where there are no seats, because I simply cannot stand for any length of time. At some point, the penny dropped that, if I used a wheelchair, I could probably visit such places much more easily. Even then, it was only two months ago when I made myself incredibly sick by visiting a garden centre but being too scared to borrow one of the wheelchairs that they loan out to customers.

The biggest change for me is that I discovered disability pride and I started writing and thinking about it. Seeing so many people who were completely unapologetic about their access needs, and so badass about it – doing awesome things like wheelchair wheelies, or beautiful wheelchair dancing – made me realise that I needed to get over the stigma of using a wheelchair and just do it.

The very last straw, of all things, was actually a 20-second Tik Tok video. The person in the video (which I’m afraid I shall never find again because I don’t fully understand Tik Tok) said something along the lines of ‘if you keep thinking about whether you need a mobility aid or not, you probably need one. Healthy people don’t question whether they need a mobility aid’. That really got into my head and I realised it was time to find one.

This whole journey of acceptance, which has resulted in my (almost) unashamed use of a wheelchair, has taken a very long time. This demonstrates the negative power of internalised ableism and the barriers that it can create for an individual who is trying to make healthy choices. I am now incredibly excited about all the opportunities that have come from my decision to use a wheelchair and I can’t wait for the corona risk to diminish so I can visit all those hitherto inaccessible places. My wheelchair is a ticket to more freedom than I have had for ages and I feel so foolish for letting myself miss out by not accepting it sooner.  

I realise I have a lot to learn about being a wheelchair user. It’s a whole brave new world, and I still need to find the right wheelchair for myself (any advice of what to look out for please drop it in the comments). But it is now something I am very excited for, so be sure there will be further reflections on using a wheelchair when I’ve a little more experience to draw on! For anyone else who is thinking about, or who has been through this process already, congratulations on defeating a little more internalised ableism, and have fun exploring!