The Power in Defining Your Chronic Illness

I write to you today from inside a café at my university. There is the quiet mumble of voices, the clinking of cups and the bittersweet smell of coffee lacing the air. Cafés are quite possibly my favorite place in the world to write, but unfortunately, I barely visit them anymore.

According to the world, I could look at this situation in one of two ways. I can be disappointed in the fact I can no longer sit here for more than an hour before going home and having an energy crash. Or, I can be thankful that I’m just here in the first place, and be grateful because things could be so much worse.

The reality of my feelings towards the restrictions I’ve had to place on myself for my own well-being since I’ve been sick is much more complex. Like with everything related to chronic and incurable conditions, nothing is ever black and white. Life isn’t consistent or predictable when you spend every day praying that your body just holds it together for one more day, every single day of your life.

The way I describe it, it sounds like my whole being is defined by my illness. I feel like this is one of the biggest fears of those with chronic illness – being defined by your illness equates to being controlled by it.

Having had almost a year to think about what life changes are bought along with myalgic encephalomyelitis (my most recent diagnosis), I’ve been through a whirlwind of emotions. The uncertainty and ever-changing
symptoms of my conditions mean that I’ve been on edge and living in fear for a long time. That, as well as the crushing disappointment of, “there is no cure,” and even worse, “I can’t help you,” left me in limbo and all consumed by managing this illness. In the end, I realized that in fighting my condition so valiantly, I had done exactly what everyone told me not to. All my actions, my thoughts, and my whole way of life became underlined with the limitations of illness.

And yet…

I am 100 percent OK with this.

Because my condition doesn’t define me. I define my condition.

I define how much I let it affect me, how much of it I show to the world, how much I want to make it part of me. Constantly considering the impact of my actions has made me a more aware individual, not just of my limitations, but also where I can excel. In refusing to not consider my condition in my life, I would’ve ended up letting my illness control me. In my opinion, constantly burning myself out and ending up with aching joints, a head full of cotton wool and forgetting where I am, is letting my illness control me.

By working with it, rather than living like it doesn’t exist, I have freed myself. I can do some of the things I love, but I must appreciate the energy it takes. Now, I spend time doing things I really want to do, rather than letting my days fly by.

I think we need to let go of the notion that being defined by illness is the worst thing that could happen to any of us. The more I butt heads with symptoms, the more obvious they become. Many of us were told as children that you shouldn’t care what people think, and the more time you spend focusing on being normal, the unhappier and sicker you will get. Everyone has limitations. Appreciate yours, and work with them. Otherwise, you might miss out on life, and that is personally my biggest fear of all.

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