When I first started dealing with chronic illnesses, there were no outer signs of anything being different about me. Most of my pain was in my upper joints and abdomen and apart from the occasional wrist brace, there was no sign of the war happening under my skin.
As my illnesses started to progress and my mobility deteriorated I began finding it difficult performing day to day tasks without help. To start with, I used a folding walking stick which could be put away in a bag when I didn’t need it. Making the decision to use a walking stick was difficult. I was still in my 20s, and thought walking sticks were for older people. I left it until I physically couldn’t manage any more and then gave in and bought the nicest looking one I could. It was bright blue with silver stripes and for a while it actually helped. It made me feel more stable and despite the stares from strangers the colours made it feel more like a fun accessory. After a while it became evident that it wasn’t a practical choice though, the handle was far too hard and was causing me pain in my hands and wrists. I gave in and bought a more practical stick, a red one with a soft gel handle, but it was still foldable. The folding nature meant I could decide to “hide” the stick if I wanted to, I could put it away and pretend I didn’t need it while I was sat on the bus or in a cafe, I didn’t have to deal with the stares or the questions, I appeared to be like everyone else, and for a while I needed that.
For me, starting to use mobility aids made my disabilities feel more real. It felt like I was admitting I was broken, telling the world I needed help in a way I had never done before. Being able to choose when to show my sticks gave me the impression of control, and I clung to it.
It wasn’t long though before my mobility deteriorated further and it became clear that walking sticks were no longer enough. I needed something I could put my full weight through, something that would take the pressure off both legs. It was time for crutches. My first pair were standard NHS crutches, silver with hard handles. I told myself they were temporary and for a while I only had to use them intermittently. I actually found I didn’t mind the crutches as much, people just assumed I had an injury, they didn’t stare or point, and they didn’t make unkind comments. When my mobility continued to decline and my crutches became more of an every day need I invested in a pair of blue crutches with soft handles, making them much easier and more comfortable to use for long periods of time.
The one thing I found difficult with crutches was that I couldn’t hide them, I couldn’t just put them in my bag “in case I need them later”, I had to use them the entire time I was out and at times I felt like a fraud. Even though I was in constant pain, and even though I almost fell a few times because my leg couldn’t take my weight, I didn’t feel “disabled enough” to use walking aids full time. I felt like I was being weak or over exaggerating. The truth was I just hadn’t come to terms with my level of need yet, I was still stuck in the “its not that bad” phase. I’ve always expected too much of myself, I always expected myself to cope with the pain without help. I realise now that I was being unfair to myself and to my body and that I probably should have started using mobility aids much sooner. Once I got comfortable using them, my crutches opened the world up to me, I could walk further, keep mobile on high pain days, protect myself from falls and maintain my independence. When I first started using mobility aids, I worried that it would make me appear vulnerable and that would lead to people taking advantage, but instead making my disability visible meant that other people became more aware of my needs, people didn’t judge me for using the front seats on the bus, people gave up spaces for me in cafes and trains, people held doors open and helped with bags. I got to see the best side of humanity, and it made me feel hope for the world.
Eventually , about a year or two before the pandemic, I began using wheelchairs on longer days out or on bad days. I usually borrowed them from the customer service office where ever I was, but when the pandemic happened most places stopped offering this service. I realised how much I had been relying on this service and after a few months of internal debate, I finally took the leap and got my own wheelchair. It’s nothing fancy and I will probably need to upgrade to an electric one in the future, but its made the world accessible when I would otherwise be trapped inside. I mainly use it for days out as walking more than a short distance is painful even with crutches, but I have also used it for medical appointments on really bad days. Without the wheelchair I would have had to cancel those appointments as I physically wouldn’t of been able to walk. I have had amazing experiences with my family that were only possible because of the wheelchair. I was apprehensive about getting it, I didn’t know if I was disabled enough, I didn’t know if people would judge me, I didn’t know if it would even be used, but now I view it as freedom. I didn’t want to admit how badly I needed it, I didn’t want to admit how bad my health was getting, but it opens a whole world that would other wise be impossible to get to. It keeps me safe, it gives me peace of mind, and I am so grateful that I made that leap.
Chronic musician 