I'm becoming more disabled
Here's how I'm coping
Hey you work of art! Before reading, I would really appreciate if you could take 5-10 minutes to fill out this survey about this newsletter and community. It would help me out a ton, and help guide the future content I make!
“What has your experience with exercise been?”
The physio lecturer asked my cohort in my referral-only (did someone say VIP?) class for managing arthritis, and the weight of my arthritis diagnosis’ hit me for the first time, despite having been diagnosed for 10 years at this point.
“I was a competitive powerlifter for seven years, and now I feel like I can’t do anything,” I admitted.
The weight of the sentence settled around me and the room began to feel heavy. It was my first time admitting this to a group of people who could best understand the mental challenges that having to quit activities you love brings, and I fought to hold back tears. “Wow” someone muttered from the corner.
When I got my entire colon removed from my body in 2016, the doctors had not warned me that such a major procedure would cause a cascade of effects for years to come. I was given the impression that post-surgery, I would not have to deal with any of my health issues anymore. They would simply be gone. They also failed to mention, that while some things would get easier, others would remain and escalate. That includes my spondyloarthritis, which while had in previous years been managed by medication, had now taken to affect my entire spine.
Safe to say when I got home that evening, I grabbed a non-alcoholic beer and started to sob. One thing I’ve learned is when you hold back tears, they don’t just disappear. They engrain themselves in the body, causing more physical and mental health issues. So in a consistent effort to grieve the body I once had, I gave myself permission to cry. And cry, I did.
“No one talks about what it’s like to cope with a new injury or health diagnosis,” I said to my partner in between tears. This statement has been logged in my subconscious since January when my back injury turned out to be a much more significant symptom of my chronic illness. It was only then that I began to seriously think about the impermanence of the body, especially for chronic illness patients.
Many people fail to grasp the inevitable impermanence of the body’s functions. While disabled and chronically ill people experience these changes more often and more acutely, no one is immune to a changing body. As Access by Tay, a black disabled influencer based in Toronto often says, “No one is immune from being disabled.”
In fact, in our lifetimes most people will experience some form of disability. Whether it be a temporary injury with lasting effects, a diagnosis later in life, or experiencing the normal effects of an aging body, almost all of us will experience our health declining at some point in our lives. And the catch is that these changes are often completely out of our control. We have no choice when our bodies decide to inflame or our bones break, and while we can do things to reduce the risk of this happening, ultimately it is in G-d’s hands.
How can you cope when your health declines and the body changes?
To accept the changing body and your new reality, you must grieve the body and reality you once had. A change in health is often representative of so much more. It can mean a fundamental change in lifestyle, daily habits, relationships, hobbies, and so much more. It can mean you can no longer access things you once could, that the barriers in the world pile up higher and higher, and the habits you need to adopt eat up more of your days than you’d like. With a new or worsening health diagnosis and a changing body, your life completely changes. You become someone new.
In order to accept the new reality you face, you must grieve. And grieve, and grieve some more. I have had breakdowns about my declining health on road-trips in front of the beach, at home watching TV, making breakfast in front of my parents, while at a dinner party with friends, and walking through the forest alone. When the tears come, I let them. I cry until I can’t cry anymore.
It helps to channel the hard feelings of grief, despair, sadness and more into something beautiful, for the most revolutionary art is often borne out of true heartbreak. Underneath the tears and despair is a treasure chest of magic. An absolutely massive part of my healing process has been creative expression. I have found indescribable comfort in writing poetry, painting and creating fashion videos. Sometimes I write and nobody sees it. I write for me. Other times, I publish my writing for a wider audience. Sometimes I read it to family and friends. Channelling the despair into art has resulted in the creation of some of my favourite paintings, poems, and substack articles.
When all feels hopeless, allow the state of the world and your body to guide you toward faith. Faith that G-d does not make mistakes. That the world is the way it is, and that what is happening happens for a reason. While it is still important to acknowledge that these changes may be unfair, challenging, and cause additional stress in one’s life, it ultimately brings peace knowing that G-d has a bigger plan with everything they do. Faith for me is rooted in my traditional ancestral culture and religion of Judaism, but even other non-cultural or religious mantras can be supportive. The point of faith is to rise about the everyday worry, insecurity and despair, and move toward a sense and inner peace and trust that you are on the right path.
Thank you so much for reading and supporting my work. I would really appreciate it if you could drop a like, or reshare this article to someone so it can help more people. If you’re looking for some new products related to bold beauty, curly haircare, gender-neutral undies, sexuality and more, you can shop my recommendations below. XOXO, Hannah