Chronic pain is invisible. People can’t see our pain and most of us try so hard to make up for our symptoms. We smile more, laugh more, work more, push more. But there is a dark side to chronic pain, a side most of us will never talk about to anyone but a fellow fibro friend. We certainly can’t talk about these things with other moms. We are afraid to mention it to our doctors in fear of being institutionalized or losing our medications because we have been labelled “addiction risk.” So I’ll just say it: Some days, when I think about the fact that I have felt like this for over a decade and will feel like it for many decades to come, I wonder if life is worth living. And I am not alone. So many women – mothers, wives, daughters, teachers, students, mentors – feel the exact same way. Lately, with the onset of winter, I am seeing this conversation happening more and more. But you know what? It makes me happy.
Not only is chronic pain highly stigmatized, so are depression and suicide. It is safer to keep it to ourselves. Discussions are filled with statements like “I would never actually do it but…” Recently a gal posted in one of my fibromyalgia groups about shooting heroin. She said “I would never touch heroin but sometimes I just want to inject myself with heroin to take the pain and depression away.” My heart cringed for this girl because I was afraid for her. I was afraid that people would respond negatively and put her down for her feelings. But to my surprise her post led to a long string of resounding understanding and agreements. Women began not only admitting to fantasizing about trying heroin but also to suicidal feelings. It was the most powerful, liberating conversation I have seen. Everyone said screw the stigma and let’s talk about this! How incredible.
A woman recently asked the group if having children was worse for fibromyalgia. Again, overwhelming and honest responses began flowing. My chest was bursting with joy as I read through everyone’s comments. So many moms candidly talking about their feelings of depression, anxiety and suicide. I am not alone! But every mother’s answer to the woman’s question was that their kids save their lives every day. Their children are the reason they push through and cope. I realized their stories are also my own.
Every morning I wake up stuff, muscles on fire, joints stabbing me, exhausted whether I got 6 hours or 12 of sleep. I wake up realizing that I have to get through another day like this. I wake up feeling as if I didn’t want to wake up anymore. Then my children burst into my bedroom thrilled to see me there. They hug me and kiss me and wish me a good morning and their warmth soothes the pain in my mind. I forget about my desire to no longer live through this. I forget about the incessant pain, the unceasing fatigue, the frustration of my poor cognition. I get up for them. I go to work for them. I come home for them. I agree to carry on for them. My children remove me from myself and I belong to them, not to my disease.
My story is not unique. There are millions of me. Moms battling their bodies for the little people in their lives. Women fighting through not only physical symptoms but living face to face with this disease. We choose to live. We accept this sadness, this daunting condition, this bottomless depression so we can live for other people. Because when you have fibromyalgia, or any invisible illness, you have to decide whether to end the pain now or endure the suffering for a lifetime. We choose to battle ourselves, to keep smiling in the darkness. When we choose life, we deserve the respect to speak openly and vent honestly without fear, without shame and without stigmatization. Speak up, moms! Speak up, women! We are warriors and our fight should not be a secret.
Without our true, honest voices, fibromyalgia will remain invisible.