It was in May of 2006 that I realized I had vitiligo. In fact I had vitiligo before that point but I had not come to the conclusion that I do indeed have vitiligo. The feeling of dread was real. Though at that point I had no idea how fast the disease would progress.
It took me almost a year to call a dermatologist and schedule an appointment.
Why did it take me so long? Not sure really. Part denial, part depression, part ignorance. There is not much good information about the disease. I went through the major websites about the disease but there are no answers there.
The question is what do you do?
I did searches on google for vitiligo treatment and found a dermatologist that was advertising under that phrase and went to the website. They talked about narrow band light therapy and the excimer laser. Of course I called them and asked to talk to someone about the disease.
Asking basic questions I got basic answers. Really the answers were half answers. There is a saying in sales that you only say enough to get the sale. Well that is how I feel about my entire interaction with this dermatology clinic. I told enough that I would buy.
Buy I did. I was there for almost 9 months. They prescribed elidel. They prescribed narrow band phototherapy. I asked them in the first meeting what elidel did. How does it work? Side effects? They said with a straight face: “We don’t know what it does.” I was astounded but not able to assert myself to the point where I could get answers I needed.
Then they said we need to document the disease for insurance so strip down and get ready for pictures. That was demoralizing. I felt like I was watching myself through the whole thing. I realize now I that I was depressed. My feelings did not come to the surface but through the blank look on my face, the lack of questions the lack of discussion among my friends and family. I went through this alone, stuck inside my own mind, unable to process how I felt about how I was being treated, what I was being told and what was being recommended. The loneliness that I experienced was only in my head. I had friends, I had family and I had a support network to rely on anytime.
Nine months after my first visit I saw another dermatologist. I wanted a second opinion. That second opinion changed everything for me in relation to my vitiligo. More on that later.