CN: chronic pain, general discussion of disability and health issues
Three years ago, I began a chapter of my life in which I had a part time job, a full-time disability, and round the clock pain. I spent a lot of time thinking about my body, my pain, and grappling with how to balance acceptance for myself with maintaining quality of life.
There are many people who have disabilities that do not bring them suffering, apart from the suffering associated with our society’s refusal to accommodate them. The disability itself is often not a problem. Society’s structure that was built to exclude them or make life difficult for them is usually the greater obstacle.
However, my disability actually does cause me direct suffering. In addition to dealing with a lack of accommodation and societal ableism, pain sucks, and I have a lot of it. No matter how much body positivity I have or empowerment for disabled people that I feel, there’s still a significant part of me that wishes I wasn’t disabled in this way, because of the way my pain, my lack of stamina, and my limits in my range of motion affect my quality of life.
It’s hard to reconcile this reality with a happy, fulfilling life. Acceptance of a disability acquired later in life is a slow process. It’s not something that happens in an instant. You have to practice it.
At some point, I discovered the video below, entitled ”I Hate Being Trans,” created by Stef Sanjati. Don’t worry, the video has a misleading title. In it, Stef explains that she frequently hears trans people say they hate being trans, but that she can’t hate being trans because she has to love herself. She gives a list of things that being trans has given her, that she loves about being trans, and loves about the trans community.
I was inspired by the idea of taking an aspect of your identity that has a large amount of stigma and is associated with causing a great deal of suffering and framing it as a gift. It gave me the opportunity to apply the concept to my own situation. What do I like about being disabled? What has becoming disabled given me?
1. A Strong Sense of Self-discipline
Managing a disability or chronic illness is a full-time job and it’s one that I have to practice my skill-set on 24/7. I don’t get to call in sick for my chronic pain. I don’t get to say, I don’t feel like doing my PT today. In order to manage my health, I follow a strict regimen, I’m exceedingly careful with how I use my body, and I regularly avoid activities I really want to do if I know it will be too much for me.
But the ability to follow such a strict set of guidelines consistently has a huge benefit. It means that when I need to do something non-health related, even when I’m struggling with mental illness, I can get myself to do it. I’m on time every time with advertising for my tango event, I finish writing or publishing a blog post even when I’m exhausted, and I will do my household chores even if I don’t want to. I’m a much more productive person now that I have a rock solid sense of self-discipline.
2. Respect for My Body
When I was younger, I was terrible at taking care of my body. I ate whatever I wanted, I didn’t sleep enough, I used it in ways that hurt, my hygiene was inconsistent, and I paid no attention to how much or what kind of exercise I was getting.
I now spend the better part of my day dedicated to managing my health, and after so much practice, I find it much easier to put my focus on keeping myself as healthy as possible. I no longer see my body as an inconvenient and awkward vessel that I have to remember to tend to occasionally. I now appreciate everything it does, how hard it works, and how many needs it has to balance. Redoubling my attention to taking care of my body is satisfying now that I’m so committed to it, and it has lead to an increase in my mental health.
3. Proof to Myself that I Can Do the Thing
Growing up, I would be very hard on myself if I couldn’t do something right on the first or second try. My lifelong fear of being bad at something makes it much harder to attempt learning skills that require long term development, and I tend to have very little faith in my ability to handle difficult tasks that are brand new.
But becoming disabled meant that I had to spend a lot of time working on physical skills that would take months to become good at, would be painful to work on, and had many setbacks built into the process. I had to do many new things that were scary or hard, like seeing new doctors, trying new medications, or walking into three days of work in a row with a tired and hurting body. Facing so many of these required tasks helped me establish a history of doing difficult things. It became easier when I was feeling anxious about a new challenge to point to those accomplishments and say, “Look, see? You’ve done similar things before. You can do this one too.”
4. Information About Health to Share with Friends
Strangers and acquaintances love to give me advice on health when they hear about my problems, but the truth is, I should probably be advising them! I’ve tried so many home remedies, experimented with diet, seen dozens of medical health professionals, tried a wide range of exercise routines, and I have between 10 and 20 small health related tasks I do a day in order to maintain health issues that affect dozens of different systems in my body. I know at least a little bit about a lot of different kinds of health, including how to manage your mental and emotional needs while nursing a demanding health problem.
When my friends are experiencing a new health issue, I have plenty of information to offer them from my personal experience. More than once, I’ve counseled a friend on how to tend to a new source of pain, and they’ve seen relief in a short amount of time as a result. When my boyfriend got bursitis in his ankle and had to avoid putting weight on it, I taught him how to socialize and enjoy yourself at a party when you can’t walk. I can offer my friends comfort and reassurance when they’re scared of potential complications. I can offer them empathy when they are suffering. I can offer a perspective and a knowledge base that I couldn’t have offered if I weren’t disabled.
5. A Community of Disabled Friends
Being disabled can be really isolating, especially if your friends have never experienced it or if it makes getting out of the house more difficult for you. When I was learning about EDS and how it affected me, a woman I knew who had EDS referred me to a bunch of EDS facebook groups and connected me to several people who lived in my city who had it too. I made friends, could get health advice from people who had the same set of problems as me, and I even signed up to receive homemade holiday cards from fellow zebras!
Through social justice circles, I found disability activists online and made friends with a number of people I had never met before. I read articles and books they had published that described other people’s experiences that were similar to my own. Becoming disabled was my first big push towards having an online community of supportive people I hadn’t met in person.
6. Improved my Activism
Disability is a frequently neglected branch of social activism. You’ll find many of the most progressive activists who speak easily on the topics of racism, sexism, LGB and T issues, will fail to ever mention disabled people or the struggles they face, and those same activists will even resist requests to change their language away from common ableist slurs.
I was very unfamiliar with disability activism before I became disabled, and because I passed as an able bodied person in many circumstances, I avoided many blatant sources of ableism. But dealing with a set of problems my friends just didn’t understand motivated me to learn more about the societal influences on what I was experiencing. Not only have I expanded my social activism knowledge to be much more fluent in physical and cognitive disabilities as well as mental illness, I've also drastically changed my behavior and my thought patterns with regards to other disabled people. People who society taught me to stigmatize and avoid, I can now humanize and connect with in a way I know a lot of people don’t bother doing. Becoming disabled encouraged me to become a more ethical, caring person than I was before.
7. Made Me a Better DJ
Becoming disabled meant that I had to stop dancing, which was a huge loss. As a surrogate for dancing, I redoubled my focus on DJing for social dances. I couldn’t test songs for danceability with my body, so I had to learn how to visualize the movement of a song with my brain. I couldn’t dance on the floor with everyone else to get a feel for the energy in the room, so I learned to sense it by watching and listening. I had more time on my hands to dedicate to searching for new music, innovating new techniques for structuring sets, and more motivation to improve my sets every time. DJing allowed me to feel connected to a whole room of dancers, and enjoy their experience second hand. Being disabled made me awesome at it.
8. New Source of Connection with My Mom
My mother is also disabled and also manages chronic pain. It’s likely she has the same condition as I do, so we have a lot of health problems in common. My relationship with my mother has been complicated and often strained in the past, but disability gave us a new subject to connect on. Suddenly, we had a common set of experiences that most of our friends and family couldn’t relate to. We could share tips and tricks for how to manage our health. We could share stories and validate each other's experiences in a way that other people couldn’t, and in a way that had been more difficult and required more conscious effort before. Rather than sitting with a feeling that my mom doesn’t understand me, now that I’m disabled, she now has access to a level of understanding of what my life is like that most of my friends don’t, and I have the same for her.
9. Source of Healing with My Parents
The history of my relationship with my parents is complicated and painful, but as we worked to get to know each other better, it became apparent that the biggest thing my parents could offer me as a form of support was freedom of choice. Since I became disabled, they’ve helped me access a range of choices I never would’ve been able to get to without them.
They were already paying for my health care, but as the new year approached, they encouraged me to shop for my own plan and pick one that suited my health needs. They assured me I didn’t need to worry about the cost of the premium. I cannot understate the value of having this insurance. It allowed me to leave a terrible doctor and pursue one that listened and prioritized solutions instead of just suppressing symptoms. It allowed me to get physical therapy once every two weeks for only a copay instead of being a cash patient and struggling to get by on one appointment a month. It gave me consistent access to prescription medications at a low cost. Having health insurance that matched my needs allowed me to get the care I needed to be functional at a level I never would’ve managed without it.
The decision to allow me to pick my health care increased my trust in my parents dramatically. I became more comfortable with asking them for help. Asking them for help gave them more opportunities to show their support for me, which in turn increased my trust in them more.
This summer, I asked if they could financially support me completely so that I could quit my job, which was destroying my body, so I could carve out the time to find a new job that would align with my interests and allow me to prioritize my health. When I asked, they answered almost immediately that it was very easy to say yes to my request. It was one of the most touching things my parents had ever done for me. They allowed me the freedom to pursue the life I wanted. I had never felt so assured that they wanted the best possible life for me according to me until I became disabled.
10. A Reason to Return to Writing
Because I lost access to several hobbies that I used to love, when I became disabled, I had to replace them with other activities that I enjoy. While I was figuring out my health, it was easy for my day to become an endless list of tasks I was required to do, with no room for fun or creative tasks, so it was important for me to find some alternatives to the ones I lost.
I came back to writing. I’ve loved writing ever since I was a kid. In the 2nd grade, we were tasked with writing and illustrating a book, which the teacher would bind in a neat little cardboard cover. Already in love with writing and drawing, I cranked out an artfully illustrated story about unicorns and dragons in no time and asked if I could please make another one. I had written three books in the time it took the rest of the class to finish one.
In high school, I took advanced English classes at which I excelled, I wrote loads of fiction in my free time, I picked up writing poetry for fun, and even took several playwriting classes. In 2008, I returned to writing poetry on a regular basis and between 2009 and 2012, I wrote a 65-page book of poetry on the subject of abuse. I should’ve known that writing was central to my identity when I carried my poetry manuscript to the post office to send off to a contest, and I gripped the packet of papers to my chest just like Anne Shirley did every time she sent her book off to the publisher, in the TV version of Anne of Green Gables.
But due to life circumstances, writing became de-prioritized by other hobbies and I no longer considered it one of my primary interests. When I returned to it in 2014, I was surprised by how much I loved it and how much I had to say. I had no degree and only a handful of poetry publications, but my friends assured me that my writing was at a graduate student level. Writing again was what inspired me to start a blog; an incredible source of joy to me now. Running a blog allows me to express myself and to do something I’m not only good at but that makes a positive difference in the world. Renewing my interest in writing also made me realize that there were jobs that paid people to write, and do it without ever leaving their house!
Disability changed my life’s path, but it also helped me find new paths I wouldn’t have sought out before. Disability closed a number of doors, but it also opened some very important ones.