No more hiding

My name is Christina and I have fibromyalgia.

Up until very recently, that is how I identified myself; in my own head anyway, I didn’t actually go around introducing myself to people like that. My point is that after I was diagnosed with Fibromyalgia in 2001, I slowly but surely stopped thinking of myself as anything other than a sick person. My disease became what defined me as a person and it took control of my life. I got caught in a seemingly endless cycle of pain, insomnia, confusion and depression, and I couldn’t see any way out of it. My family did their best to be supportive, but I got so sick of being asked: “How are you feeling?” and “Are you in pain?”, that eventually I started to withdraw from everyone around me.

Fibromyalgia is a particularly insidious condition: it leaves you inexplicably exhausted and often in so much pain that it’s difficult to think clearly, yet, there is nothing physically wrong with you. You go from specialist to specialist explaining how much pain you’re in and suffering through test after test only to be told that they can’t find anything. Eventually, the doctors begin to suggest that maybe it’s all in your head and you start to believe it. Even after I was finally given the diagnosis of Fibromyalgia, the lack of any tangible evidence of the illness continued to plague me. I was angry at my body for betraying me, for making me feel excruciating pain for no apparent reason. I was humiliated whenever someone would ask me why I was limping or holding my arm strangely and the only answer I could give was that it was because of this invisible disease.

I did what I could to hide my pain, unfortunately, the only way I could really hide it was by keeping people away from me. Before I even knew what happened, I had turned into a grouchy, miserable, hermit. I created my very own “pit of despair” (if you haven’t ever seen The Princess Bride, I highly recommend it!), and there I sat, huddling in my own misery. In 2008, I was forced to stop working altogether because I just couldn’t handle the stress. I applied for disability and spent years fighting for it before it was finally awarded to me in 2012.

Meanwhile, my life fell apart, my relationships disintegrated and suddenly, I was alone. I am somewhat ashamed to admit that even after all of this, it took me several more months to realize that I was the cause of all my problems, not the Fibromyalgia. My epiphany came one night when I was sitting in the empty house wallowing in self-pity; I had been half heartedly contemplating suicide when I had a sudden vision of myself lying on the bathroom floor, covered in blood. It was in that moment that I realized I needed help. That one terrifying vision kick started my survival instincts and provided me with enough adrenaline fueled clarity to allow me to see the truth: the only thing keeping me from being happy was me.

I made the decision right there and then to get help, to finally go and speak to a therapist about how to deal with my illness. That first decision to seek help kept me going for the next few days until my appointment with my pain management specialist where I told my doctor the truth: I was depressed and in desperate need of someone to talk to. I had known that I was depressed for a long time, but like my pain, I was trying to hide it; when I finally admitted it out loud, I felt as if a long-lost part of myself fell back into place. I found the strength to step back and look at the mess I had made of my life and then I found the resolve to change it.

Which brings me (finally!), to the reason I’m writing this blog in the first place. I know that I am not the only person out there who suffers from this despicable disease, and I’m willing to bet that I’m not the only one to ever get lost in it. I want to share my story not just because I don’t want to be alone with it anymore, but also because I hope that maybe it can help someone else. I’m not a therapist or an expert of any kind, I’m just a woman who has decided that enough is enough. I refuse to let Fibromyalgia rule my life anymore. I can’t change the disease, I can’t make it go away, but I have come to realize that I can change the way I react to it. So, I’m going to start by putting my story out there, my first change is to stop hiding.

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