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How Tactile Allodynia Has Changed My Identity


I learned the meaning of allodynia years after I started struggling with fibromyalgia. Throughout the nine years I have lived accompanied by fibromyalgia and chronic pain, I have learned something new each day and continue to do so.

Sometimes, I feel the weight of my struggle crushing me and leaving me with feelings of hopelessness as I discover the too severe side effects of a treatment I had hoped in. Other times, I feel the wave of happiness as I see an act of ableism fought against, as I embrace acceptance of my disabled identity through a fellow disabled individual’s story.

 

In my daily life, the feelings I have are thoroughly connected to who I am as a chronically ill and disabled person. However, when I learned there was a name for what had marginalized myself from my outer life, and that name was “tactile allodynia,” I felt a spectrum of sensations which I have rarely felt in my life. I went through sadness, joy, understanding and acceptance. Sadness was an overwhelming wave which crashed me and left me pondering what the rest of my life would feel like. Joy was understanding that every aspect of my social life had not been shaped by fear: there was a name for it that was a medical term, and the knowledge of it brought me pure joy. Understanding meant acknowledging my life would never fit in the parameters of what everyone thought to be OK.

Tactile allodynia means every single time someone touches me, I feel deep, severe pain. Tactile allodynia means the most basic touches and physical gestures between people are not only extremely hard for me, they are something I cannot allow myself to have on a daily basis. Whenever someone reaches for a hug, a small tap on my back or simply touches my arm during a conversation, I feel my whole body shrinking, the pain bursting through my muscles and skin, as I try to resist, breathe and continue fighting through the pain.

Tactile allodynia has changed my life completely. I grew up seeing myself following through each step of what I thought was considered normal: being close with friends, having a physical and loving relationship with someone, having children I would hug and play with. Sometimes, I still see and look for a relationship in my life. Sometimes, I think the pain is worth it. I linger for hugs, I like the touch of a hand on my skin, I wish I could stand much more and have tight, five-minutes long hug with the most important people in my life. Sometimes, there are days in which I can afford those hugs, in which the pain I feel from the touch is something I can withstand, but I need to accept my life will not fit in the parameters the able society has built for me.

Struggling with tactile allodynia has taught me my disabled life is different: hugs hurt, touching hurts, small contact hurts. I will build my life around the notion that I don’t need physical contact to express who I am, how I love and how I interact with people. I need to learn to help society respect the way I am, the way my illness has shaped every aspect of my identity and the complete worth of my disabled life.

I wish I could go around with a sign that says, “Please don’t touch,” but until that moment I will demand respect for my skin, my body and my pain. I will live my life sharing other forms of contact, other forms of loving and sharing.

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Thinkstock photo via John1179.