Don’t Assume I'm Miserable Because I Use a Wheelchair
One of the hardest things to deal with after developing a chronic illness has been people’s assumptions as they judge me and my illness — and more often than not, lump the two together. Here are five ableist assumptions people make about my life — and what I wish they understood about my reality.
1. I must be lonely and have no friends.
As an introvert, I have always felt at ease in my own company, and often lonelier in social situations like parties or work events. Granted, I still need people, and have definitely spent a lot more time alone than I had ever planned, especially during the first years of my illness when I could barely tolerate the presence of loved ones. But no, I am rarely lonely. Or, no more than I was before when I lived in a city full of people. My friends are spread all over the world, as I lived a transient lifestyle before I got ill, and I wish I could see them in the flesh more often, but I live for our sporadic meetings and utilize social media and Whatsapp to keep in touch.
Moving to the small town where my parents live has been tough, but I can finally say I know a few faces around the doors. I have also connected with others with ME online, some of whom I have been lucky enough to meet in person and forge close friendships with (I attended the wedding of one online friend this year). I am happy to have a few close friends as it’s quality over quantity, I believe. I feel like the important ones have stuck around and I am no longer wondering about those who slipped out of my life when I got ill; clearly, it was not meant to be. I spend a lot of time in nature, and find this alleviates feelings of loneliness. Sunbathing for hours at a time in one position in our shared courtyard, I notice the blackbird that joins me, the rabbit, and the dragonfly. In my past life, I may not have stood still for long enough to notice the life that is present in seemingly empty spaces.
2. I must be bored and always available throughout the day.
This couldn’t be further from the truth. When I wake up in the morning, I have to decide how I want to spend my precious energy that day. It must be carefully rationed, and as my cognitive function is best in the morning I’ll start by completing any outstanding admin tasks including scheduling doctor’s appointments and ordering and preparing medication to be administered four times daily. If I run out of energy, chores get postponed until the following day. Then I have to undertake personal care and hygiene, which is another sizeable effort for someone with ME. I usually do this on days I’m not planning to go out, or else have an evening bath. On a good day, I can add in either a baking session, a trip out to a café or to the allotment I share with my parents, or a Zoom call with a friend. But never all four!
Apart from this, I am attempting to study remotely, as I have embarked on a career change and am working towards having my own business one day where I can help others optimize their health and wellbeing from the comfort of my own home. For my course, I have to write notes and listen to podcasts and fill in regular assessments for the course. All within my very limited pocket of energy, and with scheduled rest periods so that I can function. So I am a very busy girl!
3. I must, surely, be depressed about my life.
This cuts me the deepest as it implies that to healthy people, my existence is pitiable. Just because I use a wheelchair and can’t work right now, doesn’t mean I am miserable with my lot. In the early years of my illness, I discovered spirituality and worked hard to develop a positive mindset. Now I am able to see the good in what has happened and how it has transformed me and been a great opportunity to get to know myself on a deep level and heal my mind, body, and soul. I practice gratitude and my life feels and has become more abundant as a result. I’m certainly happier than I was working in a 9-5 desk job I didn’t like just to pay the rent, using drinking binges and cake to numb the pain. Dealing with work politics, being burnt out, being a cog in the system. (And my heart goes out to anyone struggling with that way of life, I know there is not always an easy way out.) Things may not be ideal, and there are still things I want for my future, but I am content with my little life and I am able to enjoy the little things every day.
Rather than live for highs and awesome instagrammable experiences, I rejoice in the small triumphs that my improved health has enabled; being able to go on a short walk or an outing in my electric wheelchair – the independence feels amazing – doing short car trips and having them not take as much toll on me as in the past, being able to eat foods I couldn’t tolerate before and cook occasional meals for myself, as well as having more stamina for socializing and travel.
As my cognitive abilities improve, I am also able to read more, write and study. Believe me, after being deprived of these things for so long, it feels euphoric! I have been able to pursue passions and study topics I wouldn’t have had time for in the past. I also get to spend a lot of time in nature and in the sunshine, grounding and being mindful, which makes me feel quite blissful. I am more fortunate than most to be able to spend more time engaging in activities that benefit my mental and physical health. (Considering every day is focused around wellbeing, I honestly don’t know how I am not yet radiating good health, but am still hoping to get there one day!)
I’ve also learned to deal with physical and emotional pain using mindfulness meditation and breathing techniques, so my suffering is now greatly reduced. Even when I have to rest, I know my symptoms are only temporary and will soon pass. And when challenges come up, I surrender and go with the flow of life rather than trying to resist my experience.
I am not trying to minimize the very real struggle, I just want the world to know I am not a victim of my circumstance. But I fully grasp the long road to any sort of improvement, but I just want you to know while there may not be a way out, there can be a way through, and you can suffer less by finding the light in your life to focus on. I have of course been through feeling my life was over, experienced suicidal thoughts and feelings of hopelessness. But after a lot of work and determination, challenging negative thoughts over and over again through therapy and journaling, I came out the other side, a self-trained optimist.
4. I can’t have/don’t want a romantic relationship.
I feel like this topic warrants a separate article, nevertheless… There is a widespread assumption that you are unable to have a loving relationship (or engage in sex) if you have a debilitating health condition or are disabled. Therapists have even reinforced the voice in my head saying, “no one will want you” or “you are not deserving of love” by telling me that any partner would have to be a saint to have me (!). Other friends have suggested that I wait until I regain my health, but when you are chronically ill, you don’t know when that might be. You have to live your life now and not in the future. Indeed, some people may have a reduced libido, but everyone is different. I still experience sexual desire and feel I have a right to pursue this.
This year, I attempted a relationship for the first time since being sick. This has shown me that, even if I need a lot of help physically, I can still provide affection and emotional support. I have worked through a lot of struggles and feel able to offer friends and loved ones well-founded advice. It may not have worked out this time, but now I have proof that I am not a lost cause and that I have a lot of love to give to the right person.
5. I must have constant FOMO.
This is a tricky one, as the answer is yes and no. I have missed some important events while being ill, and my restrictions mean I often have to cancel much-anticipated plans. But I have conquered the disappointment, and it no longer stings as much. Cheesy as it may sound, I have found that when one door closes another opens somewhere. Often, the same experience comes around at another time in a different form. For instance, I missed my best friend’s wedding last year (which was actually due to COVID!) but we were able to recreate the wedding reception some months later and had a great night celebrating. My illness has also brought amazing opportunities. I never thought I would help to build a grassroots organization from scratch, teach myself the ukulele and write my first novel. In some ways, freed from the shackles of a 9 to 5 job, life has become even more interesting.
We are the “Bucket List” generation, where materialism was replaced by racking up experiences and posting about them on social media. Amazing travel adventures are the new status symbol. Before I got sick, I had lived in six different cities, so was already something of a nomad and was lucky to have seen some of the world’s wonders. Though I have traveled in the wheelchair, it’s not as often, or independently. So I continue to learn about the world through books, documentaries, podcasts, and language learning instead. Being unable to travel as and when I want to doesn’t stop me from being curious! As for partying and drinking alcohol, I’ve been there and done that, and no longer miss it (it would also make me feel horrendous!).
My life may seem small compared to that of my peers and less flashy, but I choose to focus on what I can do rather than what I can’t, and am careful not to compare myself to others. I’m at the age that friends are getting married and settling down and having babies, but who said that’s the future I envisaged for myself before I got ill? Because a house, car, and 2.5 children were never for me, and I quickly realized that not everyone is made for a high-powered career. But I always wanted my life to be an adventure, which it certainly is. There are still things I want for my future and am working towards and I haven’t got everything sorted out, but I feel there is no rush. My current life does accord with my values, I’ve found meaningful ways to spend my time, such as turning a small plot of land into a wildlife sanctuary to help combat climate change, and focusing on spirituality and personal growth.
People assuming I am not content seem to imply, “How can you not want more from life? How dare you be happy, despite such limitations?” My happiness makes them somehow uncomfortable. I still hope to recover, and am not resigned to my fate, but I recognize how lucky I am and that I don’t do too badly at all!
So please don’t let others’ opinions make you feel less than. And don’t let society’s limiting beliefs stop you from fulfilling your dreams, whatever they may be. Live your best life every day (as far as possible), for yourself, only! And, friends and strangers, I give you permission to stop worrying about me, ‘cos I’m doing fine, thanks!