Getting a diagnosis for Ehlers-Danlos or any other chronic illness can be quite the mountain to climb. But what happens when you get to the top and begin the descent of learning to live with the diagnosis? I’m going to be doing a series of how to adjust to life with a labelled disability. Today though, I’d like to talk about the exercise aspect of things (to nobody’s surprise!).
Specific to EDS, there are some recommendations the medical community will make to a newly diagnosed patient. There will be some movement restrictions such as no running, no heavy lifting, no heavy cardio, no high impact activities. The reason for this is because these activities have a higher impact on the joints and muscles, areas of the body which are directly affected by the genetic defect that causes EDS. Yoga is also discouraged as it can sometimes prompt us to stretch too far and that does need to be avoided if you have hypermobility. There is also a high comorbidity of dysautonomia amongst EDS patients. This includes Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). These can be triggered by intense activity among other things.
So there is some reason to ask EDS patients to be careful with their activities. But is there enough to ask every one of these patients to give up exercise and then police them for that?
To be fair, most of the policing comes from other EDS patients, and not the medical community. I was in physical therapy before my diagnosis for a couple injuries and it was my PT that suggested I be evaluated for hypermobile EDS. It was also her that encouraged me to get back in the gym to manage my hypermobility. Since then, I absolutely notice a difference in my pain levels and subluxation occurrences when I take more than a few weeks off from exercise. I am very confident in my routine, which does include yoga from time to time, especially as a warmup or off day activity.
I help admin a Facebook group for athletes who have EDS. I help others with EDS to use exercise to help manage their chronic pain. I encourage others like me to find a form of exercise that works for them while listening to and honouring their bodies. I personally think that the benefits of exercise should no be given up because you have limitations to deal with. That’s why I do what I do!
Unfortunately, there will always be people who will criticize others who are doing what they want and not “following the rules”. Recently I had an experience in a group that focuses on calling out ableism. I mentioned that I have hEDS and I workout and do yoga. Someone proceeded to accuse me of playing doctor and telling EDS patients that they don’t need to listen to their doctors. Apparently me doing yoga is attacking the entire medical establishment and saying doctors don’t know what they’re talking about?
I can tell you one thing, which is that I respect doctors fully. However, my doctor doesn’t live inside of MY body. This is my home and I’m allowed to do what I want with it. The people who come to me for my professional guidance have already made a choice. I am not a doctor, I know that. But I have extensive knowledge, not just as a trainer or graduate student, but as a disabled person myself.
My professional advice will always be this: do what is best for your body and don’t fucking police someone else for their choice of physical activity. Living with a chronic illness that involves a lot of pain is difficult enough already without people making you feel guilt for taking care of yourself the best way you can.
I hear constantly from others with hEDS that physical activity reduces their pain levels and allows them to do more and feel better mentally as well as physically. With all of the obstacles already facing us, why not use every tool to hopefully stave off any other health problems we could be facing down the road?
The bottom line is this: disabled bodies are policed enough from everywhere. Please fucking stop it. Trust me. I know my body. You know yours. We’re all just trying our best.