I have to admit it. I am a victim.

Now, just think about that statement for a moment. What was the FIRST thing that went through your mind when you read that opening statement? Did you think that I had befallen some unknown tragedy, calamity, or disaster? Did you immediately want to wrap me in arms of sympathy, words of comfort, and prayers for survival?

At any point, did you associate my self-label as a victim to my alopecia?

If you did, then you see the same problem that I did.

When I was diagnosed with alopecia in 1982, NAAF was a local support group somewhere in California that was barely a year old and not even on anyone's radar outside of California. Every doctor my parents took me to, from the Navy doctors on post to the finest medical minds that Meharry Medical College, Centennial Medical Center, and Vanderbilt University have to offer the nation and the world, couldn't identify how alopecia worked, why it worked, or why - of every single family member I have, immediate and extened for at least six generations - I was the only one to hit the hair loss lottery. Yay me!

I don't think that a child as young as 4 years old knows how to feel sorry for themselves, let alone cast themselves in the role of victim. I think that a child only does what she knows to do best, which is adapt to the situation. It is only from the body language of those around her, the words said and left unsaid, and the actions of family and friends that the child learns how to see herself. If these behaviors suggest to a child that everything will be just fine, then of course, everything will be just fine, and life goes on. However, what happens when the environment and support models designed to help someone so young adjust to such a nasty little shock do more harm than the disease which has so drastically altered said child's life?

Because NAAF was only in California, and was a local effort at best with no real intentions or foothold in the South, as far as my family was concerned, it didn't exist. Therefore, we created our own support system of doctors willing to try established and experimental treatments, counselors to help me to understand why I didn't look like everyone else and why everyone else didn't like it, pastors and clergy to help with the spiritual questions that come with something so life-altering, and of course, Mommy and Daddy reassuring me that I was beautiful no matter what. Alongside that though, as I grew up with failed treatment after failed treatment, I also noticed that our family approach to alopecia wasn't altogether different than the approach used when my grandmother was diagnosed with lupus, or any when any other catastrophe befell our family. We did our homework. We researched the issue. Asked questions and got answers. If we didn't like the answers we got, we kept asking them. We held the medical personnel treating us accountable for everything they said to us and every drug prescribed. And if something didn't work again, we had a dialogue and planned our next action. Somewhere in the midst of all that, I grew up. I went to college. I became a cheerleader. I had boyfriends. I traveled the country. I joined a sorority. And I entered the workplace. And somewhere in the midst of all of that, alopecia went on the back burner, never totally out of sight, but never totally off my mind either. There were times when my hair grew back totally; other times, it only grew back partially. Eventually, the people who loved me the most and supported me the most passed on from this world, but their lessons remain with me. And I never stopped fighting what was wrong, because let's face it, alopecia is wrong. This is not how my body was designed to look. It is just as wrong as being obese or having hair that won't stop growing anywhere. Sorry to burst the "acceptance" bubble, but it's the truth. It's not.

Enter NAAF into the picture some 25 years later. Now, NAAF, according to its own website, is "widely regarded as the largest, most influential and most representative foundation associated with alopecia areata." At first, I got very excited when started reading about NAAF. Look at what they do! Look at all of these people with alopecia! They all look so happy! The first thing I wanted to do was ask questions about what had been accomplished in the medical field since my lapse in keeping up, which had increased to several years by this point. I found about about the NAAF Conference and eagerly made plans to attend my first conference. And then I saw their "Ask the Experts" panel. Every year, NAAF asks the same panelists to come to their conference and update the alopecian public on what is being done "on their behalf" to fight this disease. I started reading the transcripts. And then I started noticing a pattern: The same people were asking the same questions year in and year out, and the responses to the questions were exactly the same: "We don't know what causes alopecia. We are hopeful that one day we will find out. And even though there are all these treatments out there, we can't guarantee that one or all of them will work for you. We can't even guarantee that your hair will stay should you stop the treatments. Oh and by the way, if you are a child with alopecia and become an adult with alopecia, there is a 1 in 5 chance that any child you have may have alopecia too. But we'll see you next year! Maybe we'll have a different answer for you, but probably won't."

Whoa!!! Stop!!! Do you mean to tell me that for all the money you raise, and the grant money you get from the National Institutes of Health, that you don't know any more about this thing in 2010 than you did in 1982?? And you expect me to be happy about this???

And then there are the support sessions and support groups. I tried those as a child, and they didn't work for me then any better than they work for me now. Why, might you ask? Because for every one person like me who, for whatever you accredit it to, lived their lives in spite of alopecia, there were 5 more who stopped living because of it. People who stopped working, went into hiding, isolated themselves, allowed themselves to be shut out of all of the things that make life exciting and enjoyable and worth living. There were some who even had attempted to end their lives, all because a single component of who they are happened to be missing. After a few of those sessions, I noticed that I myself felt down all the time; I noticed all the flaws about me rather than the attributes - and I began to blame it on the alopecia. Because the alopecia was the one thing that was constant throughout all of this, I thought that maybe I should just accept it and find a way to muddle along, just like everyone else. You see, the current support model of education/awareness/acceptance that I was buying into didn't have the one thing that I had been doing all along, and that NAAF frowns upon anyone other than themselves doing unless it's along THEIR guidelines:

ADVOCACY. Giving a voice to the voiceless, and holding the ones responsible for helping to heal us in the medical community accountable for their action, or lack thereof.

Once I recognized this missing piece, I started looking at other support groups and models for other issues. Sexual abuse victims, domestic abuse victims, cancer patients, lupus patients, people with real, sometimes debilitating physical and mental disabilities. Each and every one of these other support models for these conditions has the same thing in common: Not only do they push for awareness, education, and acceptance, but when the advocacy piece is added, the mindset it totally different. The model becomes something like this: AWARENESS that such a condition exists - and it sucks; EDUCATION so that everyone knows why it exists and why it is so important to the people affected; and ACCEPTANCE that yes, it happened - but it doesn't mean that you stop living because this horrible thing happened to you. Finally, once you are aware that a condition that you were educated about happened to someone you care about, you OPEN YOUR MOUTH and become an advocate for someone who may not necessarily be able to speak for themselves - and you make sure it DOESN'T HAPPEN AGAIN!! It is only because of this advocacy/accountability mentality that the progress has been made in cancer research, Alzheimer's research, lupus research, etc.

This leads me to my point to consider for today. According to the dictionary, a victim is "a person who suffers from a destructive or injurious action or agency; or a person who is deceived or cheated, as by his or her own emotions or ignorance, by the dishonesty of others, or by some impersonal agent." By contrast, a survivor is "a person who continues to function or prosper in spite of opposition, hardship, or setbacks." Based upon these definitions, I think that the current model for alopecia support, as established by NAAF, is one of creating and perpetuating victims. I think that there should be an alternative model established; one that pushes us to demand a cure and no doubt shakes many of us from our comfort zones in doing so, intends to make survivors out of all of us, and it's one that echoes my own individual efforts over the years.

After reading this post, let me ask you: are you a victim or a survivor?