Living with an Invisible Illness: Don't Call Me a Fighter
I have Ehlers-Danlos, a chronic illness, but I don’t want to be told to “be strong,” to “be tough,” or even that “I’m a fighter."
I completely understand where this mentality comes from, but for me, those “positive reinforcements” just make me feel tired and defeated. In fact, those phrases depress me and make me feel like a failure. There are days that I can barely get out of bed, can hardly function or stay awake long enough to get kids to school, and on those days I certainly don’t feel like I’m strong or fighting anything. And, even worse, I worry that if I’m not a “warrior” or a “fighter” on those hard days that I am failing myself, my family and then those days will just blend together until they take over completely.
However, a real break-through moment for me came during a tear-filled discussion about how tired I was of being tired. During a break of the tears, my husband asked me why I didn’t treat a nap like a check mark--an accomplishment for the day. He didn’t see a nap for me as being lazy or unproductive, and said I should manage my days by how I felt instead of the unrealistic goals I had in my head. That might go against some traditional productive thinking, but for me, it means that I am actually acknowledging my chronic illness, my health, and I am embracing it and taking charge of my days.
It shouldn’t have taken a tear-filled breakdown for me to understand the benefits of napping or to quit feeling guilty about needing a break, but I clearly needed someone to point it out. Studies on the benefits of napping don’t even just apply to the 20 minute power nap. For the chronically tired like me, there is also evidence that the less talked about slow-wave sleep of 60-90 minutes provide value in cognitive function, boost moods and reduce stress as well.
Realizing that I don't have to justify my actions was a break through moment for me in how I view my health and my own productivity. There are a lot of hard days where my checklist might only be three items, including my nap, and even on my good days I am still learning how to pace myself to keep a good health streak going. I may not have control over my genetics, but when I remember to work with EDS instead of fighting it, I’m in a much better place both mentally and physically.