Alopecia World
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In defense of Carol's recent blog
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.
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.
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Comment by Carol on May 29, 2008 at 8:06am
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YoKasta
Thanks for saving space on my page LOL I'm happy that someone agrees with me, I went to bed feeling bad about venting online. Damn technology gets thoughts out faster than you have the time to actually process it and apply ethics and morals. But it is frustrating when people are just blindly trusting and riding the medicine train that their doctor put them on. I'm just trying to put people on the airplane so they don't have a bumpy ride. Hope that makes sense?!?!?!
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Comment by Trina on May 29, 2008 at 8:24am
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Yokasta,
I read each of the post made and while I understand the frustration, I think it is placed wrongly. I mean I am on both sides of the fence. No, treatment is not a cure but there are people living with Alopecia who are in fact reacting to the treatments and therefore for them that is there cure. However short lived it may be. I wake up every morning and thank GOD for allowing me to be here and while I have many other issues because of my Alopecia I still smile in the morning because I could not have waken up. While my daughter is young and may not understand the treatments, she knows the situation could get worse and decided to deal with the treatments. I mean no a person should not have to adapt. But as a parent we talked and at 8 she undetstands what can happen and I gave her the option and she may not have understood everything but if there is a chance for her to have some normalness in this crazy world I want to give her that! She has watched her mother be strong and endure anything so I know that she knows she can make it. But what I think a lot of people on here myself included is that we did not just wake up and become strong because of the alopecia. We each endured hard times and rough patches. While most days I am glad to not have to sit in a hairdresser for hours, there are few times when I wish I did not have to deal with this mess. The moral is why would there be medicine if not to treat ailments? and just as with cancer there is no cure but people go through treatments to place something into remission. I just believe that if everyone alopecia was the same then we could say do nothing, but with all the research I have done, there is hope for some. I would rather them deal with that then to lose themselves. For through hope and faith great things have occured. I am not saying get lost into having hair but at least allow them to deal with life and their treatments their own way.
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Comment by Mandy on May 29, 2008 at 11:07am
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Yokasta,
I understand now both your and Carol's points. At the same time I think Trina just summed up what I was trying to say before on Carol's page (well said, Trina). I agree that treatments are not cures, but I also don't think there's anything wrong with giving them a shot...and I think that was kind of my initial reaction to Carol's blog. My initial impression was that she was saying...treatments never work so you shouldn't bother trying them or having your kids try them.
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Comment by Yvonne~Yhoney on June 3, 2008 at 1:37am
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I can not be on the fence with this one; I have to agree with Carol and Yokasta.
Treatments are not cures...a treatment "like all medicines and prescriptions" are the doctors guess work. They are testing and trying to see what may work for an individual, may being the key word.
Some of the treatments are barbarous and can cause more harm to what healthy/unhealthy hair follicles you may have. I could not continually allow the doctors to guess work on my head after 3 different types of “treatments”. There was one thing that worked rather quickly for me, but it was very painful for me (cortisone shots) yes my hair grew back and I kept it for a few years but then the spots started again and they were bigger…But because I'm not into allowing someone to inflict physical pain on me for the return of hair, I chose to buy wigs and cover up.
Then there were prescriptions for creams, can’t remember all of the names and different compounds that were in them…all I remember was one burned my scalp so bad it looked like I had a 3rd degree burn on my scalp, Thank GOD my skin color came back from that. And then there was a cream that cost so much for me at the time, it was cheaper for me to buy a high priced wig and cover up.
So, I guess it didn’t take much for me to become feed up with the “treatment train”… I have learned to look at it in this manner; until the medical community can pinpoint the true cause of alopecia…there will not be a cure. They are only capable of giving you band aids that your body will become immune to and adapt to.
I am not trying to burst hope bubbles on treatments but ultimately I had to ask myself this question:
How much pain or disappointment will I need to go through before I can love and accept who I have become?
I had enough and I had to make peace with that battle of wanting my own hair back.
To Carol’s comment from her blog: “There is nothing wrong with people who have alopecia, there is something wrong with the way others view people with alopecia!”
Oh I so agree Carol!
Bottom line…it is up to us to have the self acceptance and love for ourselves before anyone will accept you and your different appearance. We have to teach ourselves first and then teach our children about self love and beauty.
It’s all about Accentuating & Accessorizing! :)
~Yvonne
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Well said Yvonne!
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Comment by Diane on June 3, 2008 at 10:27am
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I aggreed with all is said so far but what about viewing the 'treatment' as an initial way of accepting this condition?
For me, I had to try everything....and belive me, I've tried them ALL!! I'm a pharmacist by background and have worked in research for a few years so I was dictating the prescription to my dermatologist... I was a very very pro-active patient!
We should not blame others that are taking this route but give them our hands and sharing our experince so can can move forward. Do not judge the way THEY choose to cope with this conditon.
Diane
PS: One more little thing: hair loss does'nt cause depression.... Causes of depression are complex... brain chemical imbalance is the major cause, with others factors such as heridity, genes, personality, situations, medical conditions...
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Comment by kastababy on June 3, 2008 at 8:49pm
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I'm with you totally Diane -- and you sound just like me, telling the doctor what to prescribe rather than the other way around. Believe me, I am not blaming others for taking the treatment route by any means. I just want the ones here who read my blog who do choose that route to understand that there is an equal chance that the treatments they undergo may NOT work, and so while we always hope for the best, we should also be realistic about the long-term effects. I call it realistic optimism.
And you are right about the depression bit too -- although if you care more about outer beauty than inner beauty, I can see where a sudden alteration of your outer beauty could be pretty devastating too.
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