If you know me, then you knew it was just a matter of time before I put my $0.02 cents in on this subject.
I have been on various alopecia support websites and communities from the beginning. I have blogged, discussed, emailed, phoned, written about, given speeches to, and chatted with thousands of people over the 29 years that alopecia has been in my life. Not once during that time have I sugar-coated what I thought of alopecia, how I felt about my looks, or my level of acceptance when it comes to alopecia. I am a human. I adapted to the changes that alopecia brought into my life and the lives of my family and friends. I have undergone treatments of all kinds, and I have been blessed enough to have periods of regrowth. The truth of the matter is I have lived with alopecia for far longer than I have lived without it, and guess what? Life went on anyway, and so did I.
Now, I have blogged before about how the current model of education, awareness, acceptance, and research is missing the advocacy link that so many other support models have, which is the fuel that progress needs in order to find that cure that, quite frankly, alopecia needs. Having your immune system turn on itself and attack an organ in your body (for everyone who forgot their biology and anatomy lessons from school, skin and hair ARE organs), no matter how you spin it, is NOT normal. Alopecia affects more people than lupus, MS, Type 1 Diabetes, Rheumatoid Arthritis, and Celiac disease COMBINED - yet for every 5 studies being conducted for lupus research or diabetes research, there is only 1 for alopecia. Something is wrong with the math there people. If anything, it sounds like the fuzzy math the government uses to run itself and the economy into the ground. It's not fair, it's not right, and it doesn't take a rocket scientist to figure that out.
I've lived with alopecia for 10,621 days - and even if a cure were to be found tomorrow, more than likely I would either continue to shave my head or keep it very, very short - simply because I live a very hectic lifestyle and I don't have time to worry about styling my hair or even combing it. However, that does not mean that I don't want a cure, not by a long shot. The debate over acceptance and advocacy is actually quite similar to the fights that the Catholic Church led for most of its existence between faith and reason. It is only within the last 100 years, as a matter of fact, that the Church has acknowledged that faith and reason are not mutually exclusive. And just as faith and reason are not mutually exclusive, neither is advocacy and acceptance when it comes to alopecia. You have to accept that it happened and love yourself unconditionally before you can even begin to advocate for an effective treatment, let alone a cure. THAT is the position that Robert is coming from, and it's one that I wholeheartedly agree with. It's a shame that now he has been suspended from Alopecia World, a truly remarkable online community, because of that opinion. I too have noticed how those of us with the strongest voices with similar beliefs are gradually being driven away as well; and that is a shame, because having all sides of an argument, rather than an accepted "party" line, so to speak, makes you an informed, educated patient, and an informed, educated patient is an empowered patient. And an empowered patient, when there are enough of them, can change the world.
I also think that there is a difference between coping and accepting. Coping is something you do short-term, in the here and now, to get through an immediate situation. Accepting is coping taken to the next level; something that comes with time and something that unfortunately, in 29 years of living with AA, I have seen VERY FEW people do. There are more people hiding and ashamed of themselves and living in a self-imposed exile because of alopecia than there are living, thriving, and prospering in spite of it. I'm sorry if you get offended, but that is the truth of the matter. It's still the white elephant in the room that EVERYONE is still dancing around. And chances are, if you ARE offended by that last statement, then very likely you fall into the former category rather than the latter. The bottom line is this: I'm a fervent, passionate supporter of the alopecian community at large, regardless of where your stand is. Nobody is demanding that you "cope" with alopecia overnight. Nobody is asking for you to even come to any level of acceptance overnight either. However, I am sick and tired of seeing any discussion about why we should be stronger and more united in our quest for a cure disintegrate into "I'm quite happy and don't WANT a cure", and then in the next breath hear a million arguments more about why your life went to hell and fell to pieces when you got an alopecia diagnosis. That kind of attitude doesn't do ANYBODY any good. I'm also sick and tired of seeing so many people who have more strength than they give themselves credit for play the victim and demand to be treated with kid gloves over something that is EXTERNAL. When it comes to any condition that is life-changing, diplomacy, tact, and looking at alopecia with rose-colored glasses can only get you so far. There comes a time when you have to stop looking at alopecia like it's covered in rainbows and glitter and see it for the ugly monster that it is. Self worth, and self-esteem, are INTERNALLY derived. That means that it comes from inside, not out. It really is a poor reflection on our society and how superficial we really are to let something so temporary permanently determine who we are and how we should be perceived.
I am PROUD to say that when people hear my name, the first thing they think of is my intelligence and my academic and professional achievements. Hair is NEVER the first thing that they think of when they think of me, and I spent years molding myself and preparing myself for just that. That was probably the most important lesson I learned as a child growing up with alopecia - play to your strengths, not your weaknesses. If you play to your strengths, then THAT is what people will remember you for. I believe, and have ALWAYS believed, from Day One, that if your only valuation of yourself is based upon what's on top of your head, you have far deeper issues than anyone on this site, or anyone without an MD or Ph.D can help you with, and perhaps those issues need to be addressed first BEFORE even tackling the alopecia issue.
Some people will get inspired by my response, most will see the logic in the response, and then there are the usual suspects that will criticize it, very harshly criticize me, and then explain why I shouldn't see things as realistically as I do and then mix no words about the way things are. That's fine. Everyone is entitled to their opinion. But I think it's a damn shame when the ones who fight the hardest for everyone are the ones who are accepted the least. But regardless of what you think, know this: it's past time we declared war on alopecia. And in this war, there is NO Geneva Convention to abide by, nor should there be. In this war, the alopecian community should be strong, it should be united, and our battle cry should be, "Take NO prisoners!!"
Who's got a response to that?