Why I'm Choosing Not to 'Fight' My Illnesses
“She’s a real fighter.”
I have such mixed feelings about that phrase. Yes, my body presents plenty of challenges, which I face constantly. However, the language equating this life to a violent war doesn’t quite fit. You see, genetic conditions can’t be vanquished like nasty infections. For better or worse, they just…exist. I wrestle with treating individual symptoms and eking out a little more energy, but the root of all that won’t retreat under heavy fire. If I’m fighting a battle, it’s against myself. Maybe it’s just me, but I’d prefer not to spend my days at war with myself, physically or spiritually.
Reading that first paragraph, you might be sad or assume that I’m super down. While mental health is a huge issue within the chronically ill population, that’s not the story today. Actually, this mindset allows me to accept every beautiful, exhausting and “flawed” part of me. Now that life isn’t all about fighting, I can focus on optimizing. This is what I have, and I can choose to make the most of it.
Often, “making the most of it” looks like resting, fueling and finding melodic music to savor. When my eyes aren’t too tired, it’s expanding my mind with a good book. Other days, I sit down and write about my perspective on life. I try my best to bring light – especially laughter – to traditionally dark places and tough moments. For me, “making the most of it” is all about love: whom I love, what I love, how I love. Instead of a battlefield, love is a strong choice.
Optimizing or making the most of it requires accepting whatever “it” is in the first place. Mitochondrial disease and Ehlers-Danlos syndrome, big parts of my health picture, aren’t going away. As much as I continue to take care of this body, the ultimate goal is not “getting well.” My conditions won’t be prayed away with more fervent words or cured by powerful drugs. Medically, my team does its very best to treat the symptoms, though the cause is beyond the reach of science today. This flawed and weakened vessel is mine for a lifetime, and speaking that truth tends to ruffle a few less-understanding feathers. Real acceptance is liberating, and it opens me up to appreciating the gains, or the attempts.
Few people have ever understood this idea; not “fighting” is different from giving up. Quality of life, abundance of joy and meaningful relationships are so much more valuable than a pat on the back for putting every ounce of energy into the fight. Yes, working with great doctors and nurses who help my body function at its best is definitely part of the plan. Pausing and breathing daily – making decisions that honor the goodness which already exists around me – are parts of the plan, too.
Chronic illness, or life in general, doesn’t have to be a chaotic, panicked war. The hard parts will continue to pop up….and likely grow in number. Accepting the light with the dark, resolving to make the most of it and appreciating the sculpting power of otherwise agonizing chisels makes for a worthwhile life. In fact, this life is so worthwhile that I’d rather put energy into loving than fighting.
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Thinkstock photo via OGri.