I didn’t realize that I was athletic until I got sick. Playing outside everyday and having sports integrated into my life was something I took for granted. I grew up in a rural place where there weren’t professional or academic sports teams. Everyone was just always outside doing activities. My dad grew up playing organized sports so our weekend, holiday, and after school activities always included tennis, volleyball, swimming, surfing, fishing, baseball, basketball, etc. As I grew older, my sports hobbies took a backseat to everything else. But, I could count on my athleticism to make me comfortable and useful in almost any active situation. I had a few joint dislocations over the years but everyone who played sports had injury stories. My only limits were self-imposed. I assumed that everyone else without a visible disability was the same way. I think that is the definition of inadvertent ableism.
Across the board, doctors suggest exercise as a treatment method. I agree that being active is very important to a person’s state of mind and overall health. Exercise releases endorphins and building muscle (not necessarily mass) is a great way to feel powerful in your body. Unfortunately, when doctors prescribe exercise for every person regardless of their ailment, patients are left feeling confused and judged for their inactivity.
Diseases such as EDS, POTS, and Chronic Migraines put the sufferers in exercise limbo. If we workout too hard we may faint or trigger a migraine. If we over stretch our joints or do certain movements, we can have tears, dislocations, and lasting injuries. Many chronic illnesses make physical activity extraordinarily painful and dangerous. From pressure hives to cardiovascular strain, symptoms aggravated by exercise can vary wildly.
With all that in mind, finding the right type of exercise for each person and disease is incredibly difficult. Trying out different types of activities with professional supervisors is a luxury many people cannot afford. In American, medical insurance seldom covers physical therapy for chronic disease. In most countries, access to people who know about rare and complex physical conditions is impossible. For everyone, getting tailored athletic plans is expensive and time consuming.
There are sports leagues around the world dedicated to disabled athletes. However, those clubs aren’t usually inviting to invisible disease participants. There are few things that feel worse than walking into a room full of high-energy chair and artificial limb dependent athletes and trying to explain how you fit in. The same can be said for joining a “regular” team. Showing up and explaining your limitations and physical quirks usually results in blank stares and claims of inclusiveness as you read the tardiness and commitment standards that you know you can’t always meet. Of course, judgment and guilt follows as you think about not being broken enough or not being normal enough.
I’ve found that typical physical therapists and personal trainers, even with their impressive educations, aren’t familiar with treating nerve disorders or Ehlers-Danlos Syndrome. In general, athletes are taught to push through pain to achieve results. Trainers and physical therapists follow that approach, leaning on pricey recovery tools and techniques to heal their client’s aches. When a person who is already wrecked asks for an exercise plan, they don’t know how to approach a workout that has such strict boundaries.
There are kinesiology professionals who understand how to make your body move more effectively, if you have the time and money to work with them. There are also some activities that can cradle the most bent amongst us. Swimming is a great way to take pressure off your joints and provides gentle resistance. Simply walking in the water or floating around encourages muscle activation without working up a sweat or heavy breathing. The main obstacle with swimming is accessibility. Finding a clean pool or a calm body of water can be difficult. Playing with animals and kids is another activity that can be within your limits but still engages muscles and encourages movement. Even rolling a ball back and forth while sitting on the ground activates your abdominal strength and helps with hand eye coordination.
I am lucky that my body still has the muscle memory of being athletic. My most painful and difficult activities rely on my former strength. While I haven’t found an exercise group, sports team, or place that fits my physical limitations, I have found ways to keep myself from losing all of my athletic abilities. When I feel good enough to be moving, those small actions make me feel even better. Just like taking control of your own medical care is daunting but worthwhile, so to is finding your version of exercise. There may be a couple extra painful days and physical mistakes along the way. All that trying may take years and will take patience, but having any positive control over your body is a wonderful thing.