Last month I received an email that made me think afresh about my idea of "acceptance." Indeed, the email deepened my understanding of what "acceptance" might or should mean to someone who's living with unexpected or unwanted hair loss. After reading the following excerpt from the email that I received, please share your thoughts on the matter.
I am all for acceptance of our particular disorder. And, of course, it's unbelievably important to educate the world about alopecia. But it is absurd to me that promising research takes place, has promising results, and is then abandoned. And alternative treatments, that seem to show some positive results with other auto-immune disorders, are all but ignored for alopecia.
I just can't get behind the idea that there is really nothing wrong with people who have alopecia; that what we really have is just a cosmetic condition where we lose our hair. No biggie. Hey, the MPB fellows have been dealing with this same thing forever. But I do think it is different. The latest theory is that my body thinks that my hair is a disease. And my immune system is attacking it. A rogue immune system is not merely cosmetic, regardless of whether the resulting symptoms are physically painful or not.
I just can't abide that the party line for us alopecians is to bolster up our self-esteem, learn to accept ourselves as we are, and then go forth to educate the masses on how to accept and understand us as well. I think (and I am aware that this is just my opinion) that there is a kind of collective guilt and shame on the part of people with alopecia that leads our community to think that demanding more funding for alopecia research and treatment options is somehow selfish and inappropriate. That the time and money should be spent on other diseases where people are actually suffering, hurting and dying.
Hey, we and our loved ones all live with the same possibilities of those other diseases. So, of course, we want them funded. But I believe that we have as much right to fight (loudly and persistently) for solutions to our problems as anyone. There are other "cosmetic" or "lifestyle" disorders that get serious-crazy funding. The psoriasis camp, for one, is great about pushing for treatments and cures. And don't try to tell me that, for example, erectile dysfunction is a life or death matter. A serious problem, no question. and a most pressing problem for those who suffer from it. But a child with an out-of-whack immune system that makes them bald at age 7 is no less of a pressing problem, and one with certainly no less suffering attatched.

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Wow. That is all I can really say to this posting. The author of this is absolutely correct of course. Why are we, as alopecians, shamed or emotionally blackmailed into accepting the pittances we call research dollars for treatments that are experimental at best and ineffective at worst? Why is it that we are the ones who are always told to just accept our condition and that we can still lead normal, healthy lives? If my immune system is turning on itself, and that is what is causing my hair to fall out, then what is normal or healthy about that? Do you tell that to someone who has AIDS, or lupus, or leukemia, or cancer, all of which are diseases and conditions where the body's immune system turns on itself and destroys an otherwise healthy body??? If you don't say that to someone with these conditions, then why should it be different for an alopecian?

I would also agree with the author of this posting that you quoted from that there is a huge bias for other "cosmetic" and "lifestyle" disorders. To me, ED is NOT a serious problem. In an age where children can be created in petri dishes and implanted in artificial wombs, it's not like having a hard prick is absolutely essential for a long, healthy, productive life. ED to me is something that is more damaging to the ego than anything else. Psoriasis? Not a life or death situation, but you can get a safe and EFFECTIVE psoriasis treatment a lot faster and with less hoopla or red tape than you can anything for alopecia, and believe me I know -- I have been fighting alopecia for over 25 years! This is not something that we should be forced to accept. We should be fighting with all the ferocity that we can muster and the power of our votes, our words, and our signatures to elect people to offices that have an influence on where the research dollars go. We should purchase products from pharmaceutical companies that will develop drugs to treat and cure alopecia. And yes, we should accept that at this moment in time, we are each other's best source of support available.

Thank you for posting this. This forum shows me yet again why I should never, EVER just accept alopecia and what it means right now. I refuse to accept what already is; rather, I choose to accept what WILL be!!!
all i can say is that this is so eloquently stated. and the author is right. i, myself, would feel inappropriate pushing for funding for Alopecia research. but when it's put in this context, i feel totally different. why should MPB, erectile disfunction, etc., get so much much publicity, when something like Alopecia can be so much more serious.

we all have to keep in mind that Alopecia is not only manifested in a cosmetic/physical way, but there are emotional repercussions that can be debilitating. the effect this disease can have on one is astounding.

though Alopecia is not a life threatening disease, it is life-altering and should not be taken lightly by anyone.
Wow! This author hit the nail on the head in my non-biased opinion. I do not suffer from alopecia, BUT to me being in the hair industry, I know how women feel about their hair. Men can rock a bald head all day long and for the most part its just looked at as he's aging or he just rocks a bald head by choice. But women are looked at like something is 'wrong' with them, they are less feminine, or they NEED some sort of enhancement, because the ideal woman should be 'flawless' and her hair is her 'crown and glory'. So to know that everyday you have to wake up 'less' than what the world expects for a woman to be can be a real downer. And what's worse is that they are not even putting enough effort into finding a medical cure and are being slack on the assistance for wigs and hairpieces! That is just beyond me! I think that this letter needs to be put into the right hands somewhere to get some force behind the ones who can get the ball rolling on this research because a glitch in an immune system to me does not sound like a 'cosmetic' situation. It sounds like you research people need to get off your crappers and find a darn cure!
It's interesting to me that my reaction to this email is, "yeah, exactly, I've been told these things all my life". I think I have always gotten the implicit and often explicit message that because alopecia is not as serious as say AIDS or cancer, the research dollars should not go to alopecia research, but instead to helping those who suffer from these terminal illnesses. However, I am someone who not only has alopecia, but a variety of allergies, asthma, eczema, and chronic headaches. And because of my alopecia (that affects my immune system), I do get sick (cold, flu, bronchitis, pneumonia, sinusitis) more often than the average person. Instead of fighting, though, I just accept that these are things I will have to deal with for the rest of my life. I tell myself that I don't really suffer, this is just how I was made.

However, one a different note, as someone who is involved in the world of research (not medical, but psychological), I have come to understand the politics involved in how research is carried out, what research gets funded, what research gets published, and how the results are disseminated. Researching a problem like ED, for example, which is not life-threatening is still highly profitable for researchers, funding agencies, and pharmaceutical companies, while a condition like alopecia is not. Medications for ED can be advertised to and consumed by a large number of people, for example. Sex sells. But in the eyes of researchers, granting agencies and drug companies, researching alopecia is not going to be a lucratve endeavor. There are simply too few people who would benefit from this research. So our experiences, both physical and emotional, become a matter of statistics. And our numbers simply don't add up to the big bucks. In the process, our experiences become minimized, and the comfort that we get, is a) you're not suffering from a life-threatening illness, so be thankful, and b) just learn to accept yourselves, (and learn to accept that minimal amounts of research is all we can "afford"). I think the people who do care about our cause are the ones who have been affected by the condition, whether it be personally or through a friend or family member. So perhaps we should find a way to start grants or scholarships for young alopecians (or their friends and family members) who want to pursue their education and engage in alopecia research. Or start asking those close to us, who may be in a position of power, to advocate on our behalf. At the very least, we need to not allow ourselves to be silenced, and begin challenging our own (and others') beliefs that we should just accept our alopecia and move on with our lives.
I can understand and relate to the email, but until then what? Until the funding and attention does come for those of us suffering from autoimmune diseases what do we do? We live our lives. We do what humans do best, adapt and deal the best way we can. We know whats going on is wrong , but instead of being angry that brings nothing but more negative energy that simply isn't helping our cause. I was riding with the author until i read the line about "I just can't abide that the party line for us alopecians is to bolster up our self-esteem, learn to accept ourselves as we are, and then go forth to educate the masses on how to accept and understand us as well". Why shouldn't I accept myself now or who I might be later?I can't ride with that at all. Awareness is important to live in this world today until we get priority I choose to live my life the best way I can.
Kudos Kudos Kudos. I agree although not with so much umph. I have always felt guilty and even told myself I have no right to feel sorry for myself when people die from life threatening conditions. But I have to say when I lost my hair as a teenage girl it FELT life threatening. It can wreck havic on your self esteem and that can be life threatening to some emotionally. Not to be negative but many times a teen and in my early 20's I drank myself into stuppors trying to medicate my feelings and also even contemplated ending it all. I was in a deep hole of depression for awhile and only by strong beautiful friends and family accepting me did I come out of it. I think more funding should go to it and hopefully in the near future will.
I am so glad that you got on the right track to accepting yourself and all your beauty because drinking that hard and for those reasons just makes my heart burst! I'm happy for you:)
Wow...I just joined this group...and have to say I'm impressed with both the author and the last commentator...I just figure my immune system is declaring war on all antibodies ( unfortunatley...this means my folicles as well...) But it is not all cosmetic....I'm healthy as a horse...Strong and True...but I get strange nausea and vomiting sessions as well...and long term effects can be extrmely serious...(Lupus...etc..) for these people to be sdo worried about ED...when I had never heard about Alopecia untill I got it seem ludicrus to me in the scheme of things....
This topic is important. Do people think that it not something that we deal with on a daily basis and that does not affect us? The questions are always there about us dying or what not. I know that I am thankful to be able to voice my frustration and get good advice from others going through some of my ordeal. This is a physical problem that can cause a lot of emotional scarring. Yes, we may be able to acknowledge that our self-worth is so much more than how we look, but being asked daily about something that we have no real reason why it happened is frustrating. I have been told its hormone related, it is stress related, it is due to diet. Well even when I change these factors I still do not have a full head of hair, neither do my mother, sisters, daughter, and nieces. So really lets find out what is causing this thing. At least we could then answer with dignity that it nothing that we are doing that causes it.
I often think about best friend's husband suffered a brain anurysm in 1999 at the age of 36. To everyone's amazment he survived, can walk, talk, play with his children. He can not however: work, be left alone, take care of his family. My friend spent the first 3 years of his illness researching every treatment, medication, doctor. With small gains and much frustration and tears.
Such as I did the first 9 years of my battle with AA. The best thing that ever happened was for all my hair to fall out! Now, I know this is AS BAD AS IT GETS! Guess what? I can handle it and still choose to live a happy life.

That's what acceptance means to me.......choosing to put my efforts and energies into other things. When a cure comes, I'm sure I'll find out. In the meantime, I've got too much other stuff to do!



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