The frustrations of being a wheelchair user

I will be honest, the frustrations of being a wheelchair user are many and though some are individual, many are shared. So, I thought today I would spend a little time explaining about the different reasons someone might use a wheelchair and then my own reasons. Then I will dive into how using a wheelchair can be so very frustrating, so grab your cup of tea, let’s get into it.

Who are wheelchair users?

Before we get into the frustrations of being a wheelchair user, I thought we would talk about the many reasons why people might use a wheelchair. Most people think only someone who has been born with a severe disability or are paraplegic would need to use a wheelchair, so I think it surprises them when they see an actual wheelchair user. There are so many reasons why someone might have mobility issues, and it is only by talking about it will society change.

There are around 1.2 million wheelchair users in the UK, and one third are ambulatory which means they can stand or walk a short distance. Many disabilities fluctuate, meaning that one day you might be able to walk a short distance, and other days that is impossible. As with most things, in reality disability is dynamic and fluctuates, people experience their illnesses differently every day.

Yet, in society, we like to place people into boxes, and this means their definitions and expectations of disability can be very rigid. I chose to share about my own experiences with chronic illness and disability because I realised, I had seen disability wrong before becoming sick myself. I was a qualified nurse, and yet I made a lot of assumptions about disability that I quickly found out were not true when it happened to me.

My first symptom that told me something was not right happened at a music festival, I was fine until the evening, and then my lower left leg started to hurt. It was swollen and difficult to walk on, I went to my doctor who thought I had an infected insect bite and prescribed antibiotics. The pain however started to spread throughout my limbs along with numbness, neither of which have ever improved.

I was left without diagnosis for a few years, before being diagnosed with multiple sclerosis, which was later found out to be incorrect. I was later diagnosed with Ehlers Danlos Syndrome, and Fibromyalgia though my neurologist did admit I was probably born with neurological problems which they would not look into.

I started to struggle walking for long, and found fatigue would become my main symptom so it was no surprise when I was diagnosed with myalgic encephalomyelitis. This causes extreme fatigue and is why I cannot walk very far, despite this the NHS would not allow me to have a wheelchair. My parents and my grandparents bought my first wheelchair, it was one I had the option to push myself but because of my fatigue I needed to be pushed by someone.

I later realised a wheelchair that was mixed with a walker would be a better fit for me, so after winning back payment from an incorrect PIP payment, we bought a Rollz Motion. This can be a walker, or a wheelchair and it has been life changing! Having the choice to walk and have independence when I am able or be pushed has meant I can go out for the day, I can go shopping and do so much more.

Most people use a wheelchair and are able to walk will choose to use a wheelchair when they are out, so they are able to leave the house. It gives them independence and allows disabled people to be a part of society while experiencing less fatigue and pain. Let’s be honest, not wearing glasses for many people can cause headaches and fatigue, so you wear glasses- it isn’t a big deal so why should it be to use a wheelchair for the same reasons?

The frustrations of being a wheelchair user

The frustrations of being a wheelchair user are varied and very individual, it depends on so many things. However, I would like to share some of my own here and let me know if you experience any yourself.

• Not being in control – This has always been a big one for me, I like to look at things in my own time and to walk my own pace. So, handing over control to someone else can be so difficult making me grumpy and snappy if pain and fatigue are also present. Being independent is important to everyone and letting go of that can be so hard to accept. However, when you trust the person pushing and can giggle over things, that does help.
• Staring – People stare when they see things they do not expect, like when we park in disabled parking, or they see me in my wheelchair. I used to find this so hard to deal with and would feel embarrassed or not use my chair because I did not like people looking all the time. But then I started to dress in a vintage style and now I don’t know if they are looking at my fabulous outfit, or at me being disabled!
• Shops are cluttered – Quite often I go into a shop and there are stands in the middle of aisles, or large products placed in the way. I constantly find myself trapped in shops and having to try and rearrange things just so I can get out. The inaccessibility of this is frustrating because it’s so simple to sort out, they just choose money over people.
• Cars are too small – Most cars are too small, and so my wheelchair, though it folds up small, does not fit. It makes me feel like I am a burden to watch people moving seats and changing everything round to accommodate. Cars need to be bigger booted so we can all go on adventures without this problem!
• Pavements – I know it sounds strange, but pavements in England are dreadful! The surfaces are uneven, there are cobbles, lowered areas to cross the road in strange places, people park on them etc; I honestly could go on and on. It makes them difficult and dangerous so walk on, and so hard to move on in a wheelchair. Instead of keeping up on these things by putting money into the system the government keep taking money out which leaves us in this mess.

I could have listed so many more, but I wanted to open minds rather than just moan about the frustrations of being a wheelchair user. The thing is that despite all the downsides of using them, wheelchairs give us independence and allow us to do more and be out of the house more. I wouldn’t ever go back to struggling without one it changed my life for the better and I am so thankful. Let me know in the comments if you are a wheelchair user and if you have any frustrations I didn’t post.

Thank you xx

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