Well Adjusted Flakers
Ed: I found your web site and thought I had died and gone to heaven. It is exactly what I was looking for and didn't know it. It feels so awesome that there are people out there that can completely relate to what I am going through.
My name is Rebecca K. I am 22 years old. I have lived with P for the last 5 years. I have patches of P on my body, but my scalp P is the biggest problem. Luckily I have an understanding boyfriend of 2 years, Greg, and a God-send of a hairdresser for the last 5 years, Debi. The best thing I have ever heard said about my P was when I showed it to Greg for the first time. He looked at me after I lifted my bangs to show him and all he said was, "So?" I asked him if it grossed him out or bothered him. He said that it looked painful for me, but it wasn't a character flaw, just something that wasn't my fault. I love him every day for saying that. Why can't everyone be that accepting of it?
Especially my mother, she stills thinks it was something I did wrong that made me have P. How can I prove to her that I would have gotten it no matter what? I haven't been to a derm for the last 2 years because when I did go to one he just kept putting me on Dermasmoothe. It would make it go away for a day or week, but then it would come back again. His answer to that was, "Well, you'll just have to keep putting it on every week!" The stuff cost $12 a bottle and one bottle does two applications! Am I made of money?
So, I live with my scales, but I would love one day to be able to wear a black shirt and brush my hair at the same time.
Sorry my e-mail is so long, but this is the best I have felt in a long time, knowing that there is someone out there that knows EXACTLY where I am coming from. I have been looking for this since the day I found out I have P. I have yet to talk or meet anyone else with P. I need this outlet. I can talk to Greg about my P, but he doesn't understand.
Thank you so much for creating your web site. You have helped me so much. I added your site to my bookmarks. I will check it frequently. If you need any help with any thing, feel free to e-mail. Thank you Thank you Thank you. Your fellow flaker and friend, -Rebecca K.
Ed's Response: And we are glad you found US, Rebecca! There is something you can do: Keep coming and keep writing.
First, find another derm. Your "Dermasmoothe" fellow is in a rut and either needs to retire or change careers. Call, write or email the NPF and ask for a referral.
I understand people who think P is something we somehow brought upon ourselves. Hell, for months after I was diagnosed, I thought it was something I brought upon myself. If you have been blessed with relatively normal health, it is difficult to grasp the concept of something going wrong that isn't triggered by something you did. Heaven knows, the medical establishment has contributed substantially to our need to assign blame. For example, if you smoke or drink, you will probably never have a lung or liver problem that is NOT auto-associated with your vice(s)true OR false. And this "guilt trip" we seem to share has layers. Another example: When I was diagnosed diabetic two years ago I went through the same what-did-I-do-to-bring-this-on? guilt trip. That finally quieted down when I learned more about diabetes and the fact that it runs in my family. But now that I'm a knowledgeable D they simply notch up the guilt. If I go blind, lose my limbs or have a stroke NOW, it's not just because I have diabetes, but because I've been careless in controlling it! They manage to instill this guilt in spite of the fact that the fine print in the literature says "80% of you are going to have one or more of these bad things happen to you if you live long enough, regardless of HOW WELL you control your blood sugar level."
I don't like these guilt trips, and you don't either. But what are we to do about them? The opposite is a sort of grim fatalism: There's nothing to be done about my condition, so I might as well just die. Somewhere between the two extremes is a balance each of us needs to seek personally. They call that place "well adjusted."
Are we well adjusted flakers, Rebecca? I don't know about you, but I'm glad I asked that question myself. If somebody else approached me and asked that question, I think I'd break his or her nose.
Stay in touch. -Ed