Carol has a blog entitled, "Treatments are NOT cures" on her page, and it is definitely a hot-button subject guaranteed to get a lot of buzz. I am in total agreement with the blog posting, and you can read it on her page at your leisure. However, in the interest of conserving space on her page, and to provide an additional space for your opinions, I have chosen to post my response to the blog here. Please tell me what you think.
Carol, I'm glad you made this vent rather than me -- I couldn't have said it any better than you did, and my vent probably would have a harsher tone to it as well!
To anyone who is a parent reading this blog posting -- I don't have to be a mother myself to love my nieces and nephew any less and NOT want them to develop alopecia themselves. Had I been given the choice as a small child, I would NOT have chosen to take any kind of treatment whatsoever -- however, because I never had that choice, I have the experience of having gone through every known treatment for alopecia, only to see each and every one of them fail at some point.
Carol, I don't believe, is trying to dash anyone's hopes, and I think it is unfair for anyone reading her blog post to assume that she is. What she is merely trying to stress is that just like we are informed consumers when it comes to the foods that we eat, the clothes that we wear, the homes we choose to live in, or the cars that we drive, we should all be equally educated and knowledgeable about the chemicals that we are putting in and on our bodies. That includes knowing the efficacy rate, failure rates, side effects, benefits and risks of any treatment. If that means knowing more than your doctor, then so be it -- although personally, I wouldn't see a doctor that couldn't and/or wouldn't answer any questions I had, let alone not do the research themselves to verify what I told them.
Hope is a wonderful thing to have, but hope tempered with realistic expectations is even more valuable. Unfortunately, in part because I am the only person in my family with alopecia I have a very mixed relationship with my mother -- I have never been able to escape the feeling that she is ashamed of my alopecia, and after 26 years she has never been able to convince me otherwise. I have lived my entire life taking the path of least resistance when it comes to her and my alopecia, and I have bitterly resented every waking moment of it, yet paradoxically I am at a loss when it comes to trying to break free of that mold. I have been subjected to years of covering my head to please someone or some group so that THEIR sensibilities were not offended, and like so many of us here I am simply fed up, frustrated, annoyed, angry, bitter, and tired -- take your pick.
I have strong faith and a strong personal relationship with God, and just as sure as I know that He exists, I also know that when He sees fit to allow my hair to grow then it will happen, with or without treatments. I know this because He has promised me that He will not put any more on me than I can bear, and He is always there to comfort me when no one else is. I believe in the wondrous healing power of prayer; I know that prayer does indeed change things, and I also know that when I am at my weakest, that is when I should pray hardest. I also know that God blessed me with magnificent intellect and sound common sense so I can discern for myself whether or not to undergo treatments. I would not have been given these gifts unless I were expected to use them to their full potential, and I like to think that in this respect I have fulfilled that potential.
This is what I understood this blog post to mean, and just like Carol I see so many of us on this site who disguise denial for hope and use their status as a parent to justify keeping themselves in that state. I don't have to have a child to not want to see a child go through the hell of growing up with alopecia, because guess what? Not so long ago I WAS that child growing up with alopecia, and I know how cruel children can be toward each other. I also see so many of us, parent or not; child, teen, student or not, go immediately from denial to despair of ever having hair again -- and personally I never did understand all the adults, especially women, who have fallen into these major depressions and become suicidal because of HAIR. Even though I have moments of self-pity myself (rare, but it happens), I have never seen hair as the be all and end all of everything, even when I did have hair. To be perfectly honest, I was more interested in the world around me as a whole than I was in myself. Sometimes I think, and I think in Carol's frustration she thinks this too (please feel free to correct me if I'm wrong Carol) that every single person on this site needs a wake-up call, myself included. That wake up call is this:
Did you wake up this morning? When you did wake up, was it with a sound mind and body? Did your friends and loved ones wake up this morning in the same way? In these trying times, do you still have a job to work, food to eat, and a roof over your head? Are your bills paid as best as they can be? If your answer to all of these questions is yes, then really, what else is there to worry about???
This is all being said to make one very valid point, which nobody I hope is denying: A treatment is NOT the same as a cure. A cure is something you take for a period of time to achieve permanent results. A treatment is something you undergo for a sustained period of time which may or MAY NOT acheive the desired result. By all means, take your treatments, and I wish anyone who chooses to undergo treatment the very best wishes. But all I ask is please, please, PLEASE go into treatment with an open mind and a realistic expectation of what the outcome may or may not be. In dealing with alopecia, just as in dealing with life itself, nothing kills hope faster than unrealistic hopes and expectations that never fail to materialize.
If you choose to respond to this particular posting, I will be posting this on my own blog, so feel free to respond there as well. I welcome any and all comments to this posting.