How Using Mobility Aids Impacted My Mental Health

I spent my entire life terrified that I’d ‘end up in a wheelchair’.

After all, from 9 years old, I only knew worsening pain. I had my first ‘proper’ knee dislocation at 11, and as I got older, my ability to force myself to walk declined year on year. I was both the glamorous girl who was pushed around school in a computer chair when my knees gave out, but also the one who was constantly made to feel like she was lazy and trying to get out of stuff by the school nurse whenever I went to see her for yet another subluxation, general pain, or fatigue.

When I was diagnosed with Ehlers-Danlos Syndrome at 21, I felt a huge sense of relief. Not only did I have a name for why my body was so ‘weird’, I finally had validation that the way I felt was actually rooted in something real. Something we didn’t even know to look for.

Unfortunately, the medical care that was offered to me was severely lacking, and no matter how hard I tried, things kept getting worse. Even when I was told that I was too stubborn to let myself ‘end up’ in a chair, I was, as I used to say a lot, in a battle for supremacy with my body and it was winning.

Fast forward another 9 years, and here I am. I ‘ended up’ in a wheelchair. And it’s probably one of the best things I’ve ever done. But there was an incredibly long process of grief and pain and confusion that went on for many years before I reached the point of acceptance which changed the way I view both myself and my mobility aids.

I’ve experienced a lot of conflicting feelings about mobility aids throughout my life. After all, having an invisible disability can be a strange thing. There are obvious benefits to being able to ‘pass’ as healthy and not facing the (shameful) stigma many people with visible disabilities face, but as I got older, I learned more and more that hiding my disabilities only ended up hurting me in the long-run. But trying to get other people to understand that you can look fine while feeling like you’re falling apart from the inside out can be a particularly hellish challenge, and absolutely impacted my mental health in a number of ways.

Even after I got my diagnosis of EDS, it took me a really long time to accept my disabilities, which meant that I went through phases of viewing mobility aids as both as a reluctant necessity and a failure. They made me feel ashamed and embarrassed and insecure. They made me feel confused and scared about my body and my future. They made me feel vulnerable. They made me feel like I was using something that was made for a ‘real disabled person’ who looked like ‘real disabled people are supposed to look’ (whatever the hell that means).

A huge part of all of this was coming to terms with how other people treated me when I used an aid, because they changed the way my body was viewed in public. On the one hand they made me feel all of the things above, but on the other, and most importantly, my slow introduction to mobility aids over the years opened the door to the realisation that I could live with less pain, less suffering, and more freedom. And looking back it makes me so angry and upset that all those other feelings overshadowed that, and stopped me from getting the powerchair that opened up my world again.

In today’s post, which is very kindly sponsored by the lovely folks over at CareCo, I’ll be sharing many of the ways that my need for mobility aids interacted with my life and mental health as a young person with invisible disabilities. It has been really interesting looking back and reflecting on how far I’ve come, but it also makes me quite sad thinking how difficult it has been, and how much guilt and shame I felt over mobility aids when I was younger.

With this post in mind, last week, I posed a question on my Instagram Stories asking my followers about how using mobility aids has impacted their mental health, both positive and negative, and was inundated with experiences that hit on many common themes that people talk about in the chronic illness community. I’ll be sharing a number of these throughout the post.

I wanted to say, once again, a huge thank you to everyone who shared their stories with me, I’m sorry I couldn’t include everyone, but have tried to be as representative as possible. If you have an experience that you’d like to share that wasn’t mentioned here, please do leave it in the comments below!

“WHAT HAPPENED TO YOU?”

One of the most jarring things about using a visible mobility aid in my experience is the sudden shift from being able to hide your disability if that’s something you want to do (and is something I did SO MUCH when I was younger), to suddenly being confronted with questions about what happened to you? It’s almost like making a choice (in some situations) to let other people know about what was, for me, something so personal that I spent most of my life hiding.

However, bar my knee supports (which you can read about here), my first experience with using a mobility aid wasn’t all that bad.

What had happened to me? I slipped on a step outside of my singing lesson and I dislocated my knee for the first time. And so I received my first pair of crutches at 11.

I honestly didn’t really have any opinion about them either way (except that I enjoyed that they were yellow instead of medicalised grey). They were just a tool to use to help recover from an injury, and they would come out to play whenever I had a serious one to recover from. Because I didn’t know that I had any kind of medical condition, they played no role in my identity or how I viewed my body – they were just something I used when I got hurt. Which was quite a lot, to be fair!

This was also similar to my first experiences using a wheelchair – they were always situational. Like, when I’d dislocated my knee but still needed to get a flight, so we used airport wheelchair services, or when we were at Disney and I had three slipped disks in my back and my brother ran around the park pushing me. If anything, these experiences were overwhelmingly positive because they were the first time that I wasn’t forcing myself to move like everyone else through a huge amount of pain, and they slowly planted the seed that mobility aids could add something to my life.

As I got older, and my knees became way more wobbly, walking around became not just more painful, but more dangerous. I started to use crutches to help give me more support, and also to keep me safe in public, especially if I had to get the tube during rush hour. They were a signal to the outside world to stay away from me, to offer me a seat, to help me with the door etc. Of course, it was shocking how many people still didn’t care, but I suppose they may have thought I was an otherwise healthy person who’d had an injury, not knowing that I’d soon have to give up my crutches because they caused too much pain in my wrists and shoulders, and trying to walk with them used up more energy than trying to walk without.

It was difficult to have something that made my pain more visible, and yet people still didn’t really care, and I was often far too scared and embarrassed to ask for a seat because of how I otherwise looked – people gave me looks when a seat was available and I’d be travelling with my parents and they’d tell me to sit down!

I distinctly remember only starting to feel uncomfortable about using crutches when I needed to use them more in my day-to-day life, not after a specific injury. People started to ask ‘what happened to you’ and I had couldn’t really say anything other than ‘nothing’.

Anxiety of people staring and judging a young seemingly otherwise able-bodied healthy (lol not so) woman who’s randomly wearing a neck brace/collar and asking unsolicited questions like ‘did you fall off a horse or something?!’ And then the whole anxiety and shame and flustered feeling of having to explain when I really can’t be bothered to go into it – @chronicallyjeantique

Once I had a diagnosis at 21, I at least had the tools and knowledge to be able to launch into a full explanation, and was often met with blank stares and confusion, especially when I’d show up one day with crutches and one day without. It caused me a huge amount of anxiety and I often felt the need to over-explain and justify why I was using a mobility aid in a desperate need to get people to understand that using one wasn’t a choice.

I do tire of being the circus attraction, always stared at, never invisible, always approached for invasive questions…I often just want to go out and not be seen, or get stuck, or be stared at, or associated with questions. So is left me more isolated and a tad less eager to go out. I’ve gotten quite exhausted. By inaccessibility and people – @hell.on.wheels

“What happened to you” also manifested when I started to ask for a wheelchair in public places where we could rent one – I was asked several times who the chair was for and was met with a look of confusion when I, the girl who walked up to the access counter, said ‘me’.

https://www.instagram.com/p/BvMX3IMgtZk/

INVISIBLE TO VISIBLE

One of the biggest things that I had to come to terms with was suddenly having my (mostly) invisible disabilities being front and centre and the first thing anyone sees when they look at me. When we took my use of mobility aids out of an injury recovery context and started realising that they were something that would need to be part of my day-to-day life, my relationship with them changed.

In my mind, they were no longer a tool I knew that I could put back in the cupboard until the next time – they were something that was going to make me very obviously ‘different’ in public. Something that would make the thing I hated so much, and felt so much shame and sadness about, obvious to everyone around me.

I think sometimes in public now my anxiety shoots up if someone looks at me. I’m super new to mobility aids and I’ve gone from being as visible as I chose to be that day (Iike my clothing choices etc if that makes sense) to feeling extra visible with my rollator. It’s like… are they looking at me because ooh cute hair or oh… disabled girl… rollator that’s weird she’s young… and anxiety goes boom – @happylittlelouise

Perhaps I was being naive, but I didn’t expect people to stare quite AS MUCH as they do, and I didn’t realise that the lack of accessibility also forced me to be the centre of attention almost every time we’re out – especially when using public transport.

Couple that with the fact I always try to dress in a way that makes me feel confident and happy, it can be difficult having so many people staring at you whilst also knowing that you look totally fine.

I use a walking stick and honestly even though I know it’s helpful, I struggle to use it even when I need it, I feel like people stare at me wondering what’s wrong with me, especially when Im dressed nicely. I find a lot of people automatically assume I’m injured, not chronically ill, and that affects me a lot I think, bc being disabled is part of how I see myself and I’m proud of it, but I find myself in an odd mix of being a bit annoyed and being happy when people just think I’ve been injured – @kincendium

And because I look how I look, the stares made me feel extremely self-conscious about everything I did in my chair. The stares I’d get for crossing my legs and the bewildered side-eye glances and mutterings when I stood up put me on edge every single time and really impacted my confidence because it yet again took me back to a time where I felt like I didn’t ‘deserve’ to use a chair.

It’s affected my self-confidence a lot. When I first began using my chair I was mortified at the thought of someone I know seeing me. I have M.E/CFS so almost felt as if I didn’t “deserve” a wheelchair or that people would think I was faking it. I had to do a lot of soul searching to realise that I was suffering from internalised ableism and struggling to accept my body’s limitations. I’m working through it & am learning to see my wheelchair as a tool to enable my freedom, but it’s still a work in progress. – @creamcrackeredblog

ACCEPTANCE & GRIEF

Taking away anything to do with other people, the single biggest challenge about accepting my need for mobility aids came down to my own grief.

I hate to use the word journey, but it is a journey. For someone who was previously able-bodied or more able-bodied than they are now, using a wheelchair may not feel like a freedom when it represents losing something that they took for granted for so long. The freedom gained with a chair can only come after another type of freedom is lost. And no matter what, there’s always going to be a grieving process.

‘But Natasha!,’ you may say. ‘Most of this is the way wheelchairs & disability are portrayed in society/popular culture as something negative & sad etc etc’. I completely agree, but again, for many people, the idea of losing the ability to walk/breathe/whatever as well as they previously had done is something that deserves to be respected as an issue outside of that.

When I was told that I was ‘too stubborn’ to ‘end up’ in a wheelchair, I believed that any deterioration was a personal failure. Once that deterioration happened and I was housebound, I had to grieve the (kinda crappy but mine) ability that I once had before I could be happy with my chair. It’s like saying goodbye to the person you once were and opening the door to something new and scary, and I think it’s completely valid to need time to come to terms with that.

FEAR OF USING AN AID IN PUBLIC

One of the most common things people shared with me on Instagram was that the response, harassment, or even abuse they received from other people for being young and invisibly disabled while using a mobility aid, caused so much anxiety that they felt scared to use something in public that would help them and their health.

The first day I used my cane, I was harassed by a Lyft driver for it. I don’t want to go into the specifics, but it made me feel very unsafe. This caused me to not use my cane again for months even though I need it” – anonymous

I don’t think it’ll come as a surprise to many people with invisible disabilities that there’s a constant fear that people will think that you’re faking. This has been backed up by recent research by Crohns & Colitis UK, which found that 93% of people they surveyed for their #NotEveryDisabilityIsVisible campaign believe that by challenging a “healthy-looking person” for using a disabled loo, they’re “standing up for the rights of disabled people” or because they believe it is “not fair” on the rest of society.⁣ And this can cause a huge amount of additional anxiety whenever we leave the house.

“I have PTSD and am hyper vigilant, and because of how I look I am usually very visible in public. My illnesses are serious, but mostly invisible, and using aids causes me such anxiety in public that I almost always forego using a chair or other aids and suffer the consequences. The idea of being even more visible in public than I already am and it being because of my disabilities is a heavy mental load to bear, and is one I usually can’t – @weeminimoose

I’ve been really lucky that the people who matter to me in my life have always been supportive of my mobility aids – in fact, they’ve always been the ones pushing me towards using them when I felt like I shouldn’t.

However, as some people shared with me, when you’re so used to receiving judgement, it can be hard to feel as if they aren’t judging you too:

“I feel like people, even my friends, see me using my cane and just think I’m looking for attention? like “oh she was walking fine a minute ago and now she’s using her cane?” and I know my friends don’t think like that at all, but it’s still something that pops I to my head, to the point that I’ll just not use my cane sometimes even when I need it – @kincendium

DISMISSAL OF MOBILITY AIDS BY MEDICAL PROFESSIONALS

If you get told enough times by people in authority that using a mobility aid is in some way linked to your lack of effort, or is something that they don’t like people in your situation using (no matter how much pain you’re in), you start to internalise those messages, and they can really impact your mental health.

The concept of preventative mobility aids was never something I came across in any serious way growing up, and it was really my mum who pushed me to be able to use both my crutches and a wheelchair whenever I needed to. We had my grandma’s old one (specially made for short people like us!) and she’d plonk me down just to get me out of bed when couldn’t function.

No medical professional ever suggested that a mobility aid could help outside of an acute injury.

As a result, I spent my teens and 20s pushing through the pain. Trying to live my life, holding back tears within minutes, shaking at the top of the steps to the tube, crashing for days or weeks or months because I forced myself to walk on EDS  knees (like all sexy, sexy young women, right? 😂). I wanted to go out when I could, but even the thought of a small walk to get food was terrifying, and I became more and more isolated and housebound.

And, what upsets me most now, is I wonder how much harm I did myself. Both in terms of pain and fatigue. Could years of pain have been avoided if I’d been told it was ok to use a chair as a preventative measure? That my ability to go out and try and live was more important than pushing myself to walk? That my energy could have been saved for strategic exercising with a professional rather than throwing myself out in the world trying to be like everyone else?

Was staying home alone and doing nothing nearly all of the time really preferable to ‘giving in’? I can never know for sure, but what I do know is how much I suffered as a result of that, but I can estimate it’s a fair amount.

When I saw my new EDS consultant last year, I told her that I’m a wheelchair user and why. She said to me that they don’t usually recommend that for EDS patients, but she can see the benefits it has brought to my life and can see it as a positive. And I know how rare that is for medical professionals to say and it just felt really validating.

There is NOTHING wrong with using a device for preventative purposes. For safety, less pain, or even just happiness. Look after yourself first. That’s the most important thing, and once I’d worked through all my feelings about it, it brought an awful lot of mental freedom back into my life.

BUT THERE ARE POSITIVES!

Once I came to terms with needing to use a wheelchair, it was like a huge weight had been lifted off my shoulders. The shame and the stigma dissipated almost overnight, and I realised that I had become so isolated and trapped and my life had become the four walls of my bedroom.

I can’t even put into words how much even being able to go out in my chair for a few minutes changed my life. Going to the corner shop to buy some food, or being able to go to the office and not keep hiding in the loos so I could rest, is absolutely life-changing.

I still can’t get out all that much, but when I do, I’m not so worried about injuring myself or even making it to the venue safely. Getting a cute chair that made me feel confident was super important to me, but the sheer fact that small things that people take for granted, like going out for literally 5 minutes when I otherwise am in too much pain (not to mention being able to go OUT OUT LIKE A NORMAL PERSON), has really helped me feel less isolated from the rest of the world.

“An interesting thing for me has been that specifically having the right wheelchair has been great for my mental health. Like I used to use a standard wheelchair that needed to be attendant propelled. While getting out more was good for my mental health, the wheelchair felt like a thing that I rode around in, rather than a part of me. It increasingly made me feel helpless and incapable, and like weirdly dehumanised? Now I have a second hand lightweight wheelchair that has a gorgeous teal frame! I can push myself now! I can go places on my own! It’s very exciting! The new wheelchair feels right for me and my mental health has improved so much. I feel strong and safe and powerful. I feel like myself when I sit in it, like it’s a part of my body. I’ve had it for over a month now, and it still makes me so happy to use it. It’s like I’m whole again, and my body has a home. I straight up refuse to use the old one now 😂”@sparklyopteryx

CONFIDENCE & SECURITY

Last week, we took a one-day holiday in London, and decided to get cabs door to door from our flat to the hotel. Because of this, we decided to try for the first time in over a year, to try going into town without taking my wheelchair, because sometimes Sebastian needs a break from the carrying.

And as silly as it may sound, it’s like my invisible disability anxiety did a 180. I wasn’t feeling anxious about being judged for using an aid or for people staring at me. I felt anxious that nobody knew that I was disabled. When I asked for help, struggled with stairs, walked in public, got up and did weird things with my body at dinner, I felt really exposed and vulnerable and unsafe.

I felt nervous even telling some people about that because you don’t want people to think that you’re dependent on your chair for reasons other than your body needing it, if that makes sense?! I think Bella explains it perfectly below:

“It’s made me feel easier about giving those first signals out to people about the nature of my condition and what my life is like without feeling the need to explain anything. For example, we got new neighbours last year and the day they moved in I went out on my scooter as they were shifting stuff into the house, so the first time I met them was just a wave, a “hello!” and then scootered off. It felt really good to put that out to them without explaining. I’m so incredibly lucky with my neighbours in how comfortable they make me feel and never put me on the spot or ask invasive questions like that. Having my scooter also gave me a feeling of sort of solidified my identity as a disabled person in ways I never even thought of. It’s not like I felt less disabled prior to using one, more that it’s a visible, public display of my identity in a way I never experienced before being that my disability is not visible. It gives me a sense of permanence and control, like its my way of asserting my own autonomy over my body, my identity and my sense of freedom and independence. I realise there’s quite a bit of internalised ableism in some of the things I’ve said, ideally it’d be great if we lived in a world that made it feel safe enough to not need to explain or give those visual signals of disability for our needs to be respected or recognised! But I think more than that, my scooter gives me that visual identity which I really really love, like I never thought I’d love it as much as I do, it makes me feel amazing! – @bella.milroy

I can’t even tell you how how many times people have commented over the years on me using a disabled loo or using accessible facilities in general when I’m presenting as otherwise healthy. How much I’ve had to push myself to the point of tears and injury to be believed in public. The mobility aids really do serve as a shorthand to ‘actually disabled’ in many places, and I find that whilst there is a fear of judgement, the wheelchair very quickly shows that there is something ‘wrong’ with me, and my need for assistance is legitimate

AND NOW?

Well, I feel incredibly grateful to be in a place with mobility aids where I literally don’t give a damn what other people think. I know why I need to use a chair and what benefits it brings to my life, and that is far more important than the ignorance or misconceptions that strangers have about me and about disability in general.

However, there’s still some conflict there. Using a wheelchair has both given be freedom but also restricted where we’re able to go (or should I say the lack of access has restricted where I’m able to go as a wheelchair user!)

There’s definitely a level of anxiety that’s there every time we go out in terms of whether there’ll be adequate access provision, or whether we’ll have some issue with people trying to ‘help’ by grabbing me (as happens before and ends up injuring me) or any number of other issues that wheelchair users face in public.

I also get extremely frustrated with people belittling me in public. Literally last week, someone looked at me and said “aww bless” as I was rolling around Boots looking at makeup. Because…disabled people wearing makeup is cute…?

Whilst I am more confident in myself as a wheelchair user, the behaviour of others can still make me angry, and I’m getting to the point where I’ll look people straight in the eyes and respond to the things that they say because yet again it’s so strange to me how people feel they can be so loudly judgmental to a stranger just because I’m in a chair.

It can be exhausting to feel like you have to steel yourself for ignorance and ableism every time you walk (well, roll) out the door, but for me, this is a much better situation to be in than not being believed at all and having to actively fight for help.

I do find that there are often times where because now people are used to seeing me in a chair, that there’s still a big lack of understanding that I am an ambulatory wheelchair user – meaning that I am able to walk for very short distances even though it still causes me a great deal of pain and I can’t do it all that often still. If I walk a small amount, people often comment that I’m obviously doing better, or are confused why I’d use the chair immediately afterwards. It’s a small thing but it does get draining.

Overall, though, my mobility aids have gone from something that brought me a lot of shame and anxiety, to something that has enabled me to have more of a life and enabled me to do things that are of benefit to my mental health. Whilst there are still many challenges, I’m so incredibly grateful I learned to accept my mobility aids, and by extension, myself.

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