About a week ago, a co-worker stopped to talk to me about my bald head. To my surprise, she knew that it was alopecia and not the usual assumption, cancer. After talking to her about her son and the difficulty they have had trying to find support for alopecia sufferers in our area, I've been on a bit of a mission to set something up in the Portland metro area. To help with this, I turned to Facebook, Twitter, blogs, etc. to get information on how to start.
I tried to network with other alopecia sufferers to see what they do and just to talk about this disease. But guess what!? Almost anyone who says that they are associated with alopecia is trying to sell magic hair creams, hair transplants, wigs, or dermatology services. I find it sickening that when people who suffer from such a stressful disease, try to reach out to others who know what they are going through, they are bombarded with ads telling them that they need to be fixed!
I'm not saying that everyone who has alopecia should go without a wig, or stop trying to find a cure. I too wore a wig to hide the bald spots for a long time and I still might be tempted to try anything that has had success and is not as invasive as most alopecia treatments are. It took me a long time to come to terms with alopecia being a permanent part of my life, and I have no intentions of going back to the person who was afraid of what others would think.
There should be support for those of us who are fine with being hairless and in fact, are proud of it. I think of my lack of hair as I do any of my other physical traits. It is as much a part of me as my blue eyes and short stature. I don't want to hide who I am and I don't want to be made to feel like I'm alone in these thoughts. We alopecia sufferers need a place where we can feel comfortable to be who we are. Wig or bald, patchy or totalis, confident or stressed, we all have the right to be who we are without others telling us to be 'normal' (as if that were a real thing).