While Alopecia Areata is not the end of the world, it is one cruel joke. It’s now been several years since I ‘lost it all’. During this time I tried various treatments from pharmaceutical to homeopathic, Chinese medicine and acupuncture. Taking prednisone was a gamble that didn’t pay off. The weight I gained while on the steroids slowly came off as I weaned off the pills. Unfortunately, the glaucoma that I also contracted will stay with me for life. I’ve changed my diet several times, made great strides in reducing stress, and even gave the DPCP one more shot. None of this has worked. Not one hair has returned. What some people don’t realize is that alopecia is more than just a cosmetic inconvenience. I’ve come to know many other alopecia sufferers and I’ve listened to their stories. Like me, the vast majority experience other auto-immune responses such as irritable bowel syndrome, skin conditions, and allergies. Our immune systems are further compromised when we lose our eyelashes and nostril hairs. These hairs are vital to protecting us from foreign substances. Eye and sinus infections are common. But the physical distresses are minor compared to the emotional devastation.
My alopecia journey lead me down the road of denial. I bargained, felt guilty, got angry, and fell into a depression. Through it all, I couldn’t imagine ever coming to accept it. I broke down once during an annual physical so my doctor suggested I go for counselling. I started working with a wonderful young therapist named Cleo. I told her everything about my experience from the humiliating moments, to getting misplaced sympathy from those who thought I was going through chemo. I told her about how guilty I felt wallowing in self-pity because alopecia was a benign disease. I wasn’t really sick. Cleo recognized that I hadn’t allowed myself to grieve. I didn’t feel I’d earned the right to grieve. She explained to me that losing my hair is a real loss and that it’s normal to feel depressed. She allowed me to vent my anger at the disease. My anger had been so deeply suppressed that it worsened my depression. I also learned from her that I had to regain my identity. I didn’t look the same and therefore people treated me differently. This was a huge shift for my ego. I had to acknowledge what had changed, but also what had remained the same.
Alopecia has changed me. In the beginning the change was negative since I had to learn how to communicate and identify with the world around me differently than before. As Dr. Angela Christiano of the National Alopecia Areata Foundation put it “Total hair loss is a profound event.” When discussing what happens to alopecia patients on an emotional level she is quoted as saying: ‘”They lose the ability to communicate to the world in the way they once were able to.”
This is so true, although you have to live it to completely understand. I sensed that some people saw my alopecia as a sign of weakness, and initially it was. I felt compromised and I’m sure that I was sending off signals of inferiority. Time heals to a degree, but a key factor in healing is to regain one’s sense of self. Once I stopped worrying so much about what people thought and allowed myself to grieve, I was finally able to accept the fact that I had lost my hair. This gave me an inner strength that reflected in my outward persona. I now had people telling me that they admired my strength. It’s funny how our perceptions and fears will send out messages both positive and negative. Many said that they didn’t think they would have handled such an overwhelming event as well as I did. Truth be told, not one of us knows how we will handle difficulties until we are confronted with them. I still have my bad days. Little things, such as people asking personal questions, can trigger a downward spiral. But now the lows are not as low, and I don’t stay there for long. In time, I found the right wigs and cosmetics which really helped me in my recovery. I can now look in the mirror and see myself once again.
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