Please Don't Tell Me to 'Take It Easy!' When I'm Active Despite My Illness

I knew the comments would come, as they always do, when I posted a video of myself snowboarding on Facebook two days ago. You see, the prior day, I had been in the emergency room getting IV fluids. I become easily dehydrated due to the fact that I have no large intestine, and have an illness that makes maintaining fluids a very challenging task.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

This is far from the first time I have done something like this. My life is a paradoxical dichotomy: forever oscillating between a world of hospitalizations, appointments, surgeries and tests, and lightspeed-living in the great outdoors. And every time I jump between the two, I get the dreaded:

“You should be taking it easy” or some variation thereof.

One simple phrase that inevitably makes me cringe and puts me instantly on the defensive. Why would I prickle at such a seemingly well-intentioned statement?

1. If I stayed in bed every time I felt under the weather, I would never leave it. I’d essentially become the grandparents in “Charlie and the Chocolate Factory.” Most of the time, “good” days for a chronically ill individual would still be a nightmare for those who enjoy good health. I am a person who loves life. I love adventure and doing new things. I love the outdoors and the intricate beauty of the world. Life is already too short, even for those who are well. I don’t want to just exist; I want to live. To thrive. Why would I give my illness even more of my limited time on this Earth to it than I already must?

2. I do, in fact, rest when needed. Today, for example: it’s a beautiful and rare sunny winter day here in Seattle. There is a newborn whale on the water and I am itching to get my kayak out there. However, I woke with some muscle weakness and immediately knew that pushing it would be reckless. I have anywhere from two to five rest days in a given week. I simply don’t broadcast those days as often as the days in which I am having fun because… duh. (Perhaps not the most eloquent explanation, but certainly the most concise.) I have had many years of figuring out my limitations, and discerning between those I can push through and those I must honor for the sake of my own well-being.

3. At least regarding my gastrointestinal health, telling me to rest is really bad advice unless I am so dehydrated that I am in danger of fainting. You see, when you are sedentary, your digestion slows. Mine is already significantly impaired. Remaining as active as possible is the best treatment I have for my gastroparesis.

Even if that wasn’t the case, I have complex-PTSD. (Yes, I am that lucky to have both physical and mental illness. It’s actually quite common to have both.) I have a reached a point where I cope astonishingly well with it now, but many of my coping mechanisms involve the athletic activities that people constantly scold me for. When I have prolonged illness flares, depression and anxiety typically follow suit. Though I by no means wish to undermine my own physical illnesses, my mental health is the more important of the two, and I retain that mental wellness when I am on my snowboard, or horse, or kayak, etc. I feel the physical price is worth it for such a profound gift.

4. “But you seem to injure yourself all the time!” people often respond when I am defending my active lifestyle. This is true: on my snowboard I have dislocated my pelvis, my shoulder, and recently, my wrist. A hallmark of Ehlers-Danlos syndrome is frequent joint dislocation. I occasionally dislocate in my sleep on my Tempurpedic bed, so being sedentary isn’t going to help! Would I rather injure myself doing nothing? Or doing something that fills my life with joy? I have to choose one, and for me it will always be the latter. There might come a time later when I am no longer able to make that choice, be it tomorrow or 20 years from now, and if those days come, I don’t want to spend them awash in grief and regret over wasted opportunities.

In the end, I have had this body for 34 years and am the only one on the planet that knows how to wield it. I implore you to trust that I know what’s best for me. And I guarantee that all of the able-bodied individuals out there who have said this to me or anyone else living with a chronic illness would suddenly gain an unfortunate wealth of understanding if they developed a chronic condition and/or disability themselves. Our lives are a constant scale, and I believe sometimes we need to tip the balance them in the direction of that which makes us who we are.