Since my first introduction into the alopecia community in August of 2010, I have experienced a wide range of emotions, and revelations.

My first thoughts when I was first diagnosed with alopecia as an 8 year old was horrified. How can something like this happen to me? And how can I possible live like this. Well obviously 28 years later I do continue to live. In fact I thrive.

A very quick overview of my experiences growing up with alopecia..... I was diagnosed at 8. It was first bald patches but quickly went to total baldness. With this my mom had me at doctors, dermatologists, and even counsellors. Many treatments, and a wig later, still no answers. The doctors didn’t even have a name for it. Family blame and family “fix it” answers and still nothing. I was bald. Cruelty from other children, hiding and constant tears, were the only that I knew during this time. I still have the scars of the bullying that I experienced. My hair did grow back eventually, but it didn’t end there. I was always battling bald patches and the shame that I felt with this disease. Any time, if I did speak of my alopecia, was always in past tense. I had alopecia, but no longer, while hiding the newest bald patch.
The only thing I wanted the entire was that there was a cure. So no other child experienced what I had experienced. Even then, I didn’t know of one other person that had this disease. I didn’t know of a support group, of a community of others, or even a single person that had this disease. I was told that there were others with alopecia from the doctors, but I was the only one in my world. This only magnified the isolation I felt.

Jumping to 19 months ago, when I first found about this entire community of alopecians. A world I didn’t know existed. I was at a very low point with regards to my alopecia. I was going to my dermatologist on a monthly basis (for a total of 10 years) for painful injections and ointments smeared on my head. I was getting regrowth, but the loss was much faster. I was scared, I was hiding, and I did not want to go on. I was isolating not only myself, but family and friends that were desperate to help but not knowing what was happening. I convinced myself that I deserved the punishment and pain of the treatments for as long as I did, for at least I was not giving up. AAHHHHH If I only knew then what I know now.

September 2010, I shaved the last of the hair off. I made connections and friends that knew what I was going thru. That night I felt like 10,000lbs came off my shoulders, when I shaved what looked like an oversized hair ball from my head.

Since that day, I have come across this entire world of alopecians, from all over the world. At all the stages of this disease and of all emotional stages of what this disease can bring about. For the first time in such a very long time, I felt happy, embraced, accepted, loved and I smiled more than I had in just as a long of a time. These emotions that I felt were not only from those around me, but from within. For the first time I actually loved who I saw in the mirror.

But these feelings didn’t last long either. As I continued on my journey of exploration of this new me, I connected with more and more alopecians. Some of which were still very angry, hurting and willing to bring anyone down with them. After a couple of months, speaking with this group, I made the decision for myself. I worked too hard to find what made me happy to let anyone to take it away from me. I had the choice to who I wished to connect with. I didn’t have to follow every group of alopecians, just because they also have this disease.

Today I know this one thing for sure. Alopecia is a difficult journey, one that cant be done alone. But it’s not a death sentence that I first thought it was at 8. We have the choice on how we wish to go about our journey. For me today, it’s to bring as much awareness and support as I can. To tell the world what it is like to live with this disease. To inspire others to take a step out of their comfort zone to do more.

Alopecia changes everyone, and as any affliction it comes with its own adversities. Its our ability to adapt and change that makes us stronger to be able to work thru our adversities. Im thankful today that its alopecia that I have and not something else. Alopecia has allowed me to see the strength, and determination that I possess. My drive is to bring more awareness, to support, to show our community that we will not let alopecia control our lives and to inspire others. To get our larger community around us to realize that alopecia is a real disease that deserves to be acknowledged and fought for better treatments and possibly a cure. And I will do that by showing the world as a proud, beautiful, strong and fabulous woman.

Too often we are own worst enemies. Too often we let others influence what we should be doing or how we should go about doing it. Just by telling one person about your alopecia makes an impact and how you go about telling it can make it a major accomplishment. Taking that extra step for awareness. Even if that person is a parent, best friend or boyfriend/girlfriend. As long as we are being genuine to ourselves, that is all that matters.
Be that proudly wearing your wigs or nothing at all. Alopecia has taught me this. And my alopecia journey will continue for I will always thrive to do more, learn more and connect with others.