How Loving Myself Is Helping Me Live a Full Life With Fibromyalgia

I just gave up a piece of myself.

I just gave up the conductor – the beautiful, dancing, flame-haired conductor with arms outstretched before her choir encouraging dazzling sounds and hushed silences and gorgeous crescendos and teen passion with a flick of the fingers, a grin, a wink, a laugh.

I just gave up a piece of myself.

Rehearsals happen at night, after supper, when I have to drag myself, already exhausted, out of the house, rev myself up to a shadow of that sparkling persona. I just can’t anymore. I can’t do that role anymore.

There are so many emotions to deal with as these pieces of my life float away.

Of course, I feel angry. I’m back at the computer searching and searching. What haven’t I tried, who haven’t I seen? What else could be causing these symptoms? There’s always a sense of unfairness about my fate and I have to give myself a mental shake. Unfair how, exactly? Thousands of people are struggling with this disease, struggling far more than I am. What makes me so special to think I should escape this particular fate?

But worse than the anger, I feel embarrassment. That once again I’m going to have to find a way to explain why I’m not doing what is expected of me. I’ve spent the last 10 years working for free and I find it so hard to say that I can’t do it anymore because I’m sick. Why does that embarrass me so much? Why does that affect my self-esteem so badly? Why does admitting to illness feel akin to admitting a weakness?

Perhaps it’s time for a rethink.

On a recent weekend away, I treated myself to a spa visit. Always reluctant to risk a massage with an unfamiliar therapist, I chose a muscle relaxing body scrub. The esthetician greeted me in the lounge and asked if I had any health concerns she needed to know about and I mentioned my fibromyalgia and that I might need to shift around a bit if I felt uncomfortable. We chatted a bit about my condition and then she turned and looked at me with a piercing gaze and said, “You need to love yourself.”

I was a little taken aback to say the least. My initial reaction was to step back and arm myself emotionally. Here was another person who was going to tell me that I needed to be “more positive” and that my negativity was making my illness worse. But then she lightly touched my midriff and said, “You need to love yourself from right here.”

Tears sprung to my eyes because she was right. Whether she saw something in me, in my posture or the way I hold myself, or heard something in my voice, or whether it’s something she says to everyone, she hit the nail on the head and struck on something I hadn’t faced. That in this moment, with this disease, I don’t love myself.

All of that came flooding in on me in a moment. I don’t love myself like this.

Don’t get me wrong. Negativity didn’t cause this disease and loving myself isn’t going to heal me. But loving who I am right now is an important step toward living the best life I possibly can.

How lucky I am to have had that past – to have been that conductor, the teacher, the singer, the girl who could hike for hours, the mother who could carry her babies on her hip, the young woman who could read a novel in a day. How grateful I am for that past. How fortunate I am that my body has carried me this far.

But now…

I am a beautiful, inwardly-dancing, flame-haired warrior. I get up every morning and greet the day no matter how much pain I am in, no matter how foggy my brain, no matter how exhausted my body. I care for my family. I listen to my teens and provide an environment where they feel safe and loved and cared for. I’m a good wife. I think deeply. I look at the nature around me and soak it in with my eyes.  I care about my fellow humans, the environment, the political landscape and I stay as present and involved as I can. I show love to friends and my extended family and make sure they know I care. I do everything I can to keep my body as healthy as possible so I can continue these roles for as long as possible.

And so I’m going to move forward now, casting away the pieces of my past that no longer fit the reality of my present.

And, without embarrassment, I am going to embrace my present role.

I am a woman, a wife, a mother, a friend, a daughter, living a full life with fibromyalgia.