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What has alopecia done for you?
In an article about living with alopecia, written for the Chronicle of Higher Education, a humanities professor shared,
"As one of more than 80 different autoimmune disorders, alopecia challenges me to understand how my body can reject part of itself against my wishes. It taunts me to grow strong enough to accept myself regardless of the way I look. It makes me wish that I could reconcile my own body image with the intellectual notion that gender is a social construction. It has revealed strains of wondrous generosity and soul-crushing cruelty in strangers, family, and friends. At every step along the way, alopecia continues to teach me about human nature and life's unpredictability."What has living with alopecia has done for you? How has coping with the condition changed your life? What positive and constructive lessons has dealing with the condition taught you? What are some of the greatest challenges presented by your alopecia? What wonderful or woeful discoveries have you made about yourself as a result of having alopecia?
Tags: acceptance, challenges, coping, lessons, self-acceptance, wisdom
Replies to This Discussion
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Permalink Reply by Trina on -
Wow! This really made me think with this one. It has made me strong and weak at the same time. Kind of a contradiction.. I belive that I learned to love myself for just being me. I belive I am much more compasssionate yet not willing to deal with people nonsense. I think it some ways it has made me very untrusting of some people and their actions. A long time ago, I was extremely conscience of what others thought. Now, I could care less. I guess to say the least I found strength that I did not know I had. Coping with this has changed my life because I wonder would I be as carefree about hair if I had not gone through this ordeal. In dating I believe I have found better mates who were not as self centered.
The challenges have been learnng to trust and learning to cope. It is hard for people to assume that you are dying or sick.. Do I look sick to you? I am just more at peace with me. While some days Alopecia takes it toll on me. Then I think someone else can't get out of bed, or ride a bike, or tie their own shoe, and I look up at the sky and say thank you to GOD. They sell hair in the store, but you can't go buy legs.
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Permalink Reply by marisa on -
I have to say that having alopecia has made me look deep into my own self, I have done a lot of soul searching, and learned a great deal about life and spirituality, I have a six year old daughter, and just today I said to my mom, That having this condition I have changed and learned so much about whats really important in life, And I believe that what I have learned will be a great lesson for my daughter, and in turn will give her a more fulfilling life.. So as hard as this has been to accept, It has made me a better person, And that will have an effect on many others. I've learned to love the best part of ME.
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Permalink Reply by Carol on -
I think for someone who's had alopecia their entire life this question is difficult to answer but I'll give it a shot. I am quite sure that I would have been very different had I not alopecia. Just from the environment I grew up in, image was a big thing in my community as I imagine it is in many other parts of the world. The kids I grew up with were not tolerant of any deviations either. I'm sure I would have ended up just as shallow and mean. Instead I have compassion and understanding. I also recently overcame another barrier as an adult when I was suddenly being appologized to from the very people that teased me as a kid. At first it was as if they wanted to hurt me again by rehashing it but then I realized that they truly felt bad for what they did. I can now forgive! Compassion, understanding and forgiveness are assets for any human being to have and I'm glad that I am able to apply these on a regular basis.
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Permalink Reply by Miranda on -
Answering this question is extremely difficult for me because I am not the one immediately effected by the disease, my daughter is. Although, this has overwhelmed my life. It made me rethink things that I had done, what did I do wrong? It has made me try my hardest to protect my daughter. It has made me hide from something, hoping it will just fly by. It has challenged my life, and will challenge my daughter's life to the max. It has made me worry for things that normally a mom shouldn't need to until it is presented later. It has done way more negative things than positive, for me. I feel it has made me shelter my daughter way more than it has allowed me to let her explore. Alopecia has questioned my ability to be a good parent, wondering what did I do wrong? Alopecia has made me question my husband, what did he do wrong? Again and again, what did I do wrong? I hate that something can overcome me like this. Right now, I feel like alopecia has made me have hate for things you can not control. I hate it for making my daughter's life more complicated. I wish that I could replace my daughter with the struggle of alopecia. I want to be the one to be judged and criticized. I want the balding head. I wish alopecia could have done that for me.
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Permalink Reply by rach on -
having a son with alopecia ,reading your words as if you were reading my thoughts I feel exactly the same as you do, I wish I could replace my son, and take away all the suffering he has ahead of him, I worry about him constantly ,
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Permalink Reply by Meghan on -
hmm, this is a very interesting question.
Being recently diagnosed with alopecia has taught me how strong of a person I am. It is weird because everyone of my friends always say how maturely I have handled the whole situation, and if it was them.. they would not be able to "do it". Then they say how if they lost all of their hair, they would never leave the house and they would be depressed and not know what to do with themselves. Honestly, I do have days like these, and since I am still very new to all of this, I frequently have these types of days. It hurts but I do my best to go on with my life. You cannot hide from the world because you are (according to society) "different". I feel like for the first time in my life, I am standing up for myself and who I really am. I am going back to college in september and I am nervous because when I left for the summer in may, I had a full head of hair. I am going to have to tell people about my alopecia. I just hope that I am strong enough to do so. I want to show people that I am comfortable with who I am, with or without hair, and I think that is much more than most girls my age could say.
My alopecia has also reminded me how much certain people love me. My family, friends and boyfriend have all been tremendous. I would not have been able to do this without all of them. They are the ones who are there for me when I have my "bad days". It is just nice to be reminded how much people really care about you no matter what you look like, because I think alot of people forget this. It is a good feeling knowing that my boyfriend finds me attractive with or without my hair. As I mentioned earlier, I don't know how many 19 year old girls could say that about their boyfriends. As I was telling one of my friends today, I think alopecia has just helped me cross over into adulthood a little earlier than most people my age. I don't really know if I am happy about it yet, but i think it will come in handy this upcoming year at school.
Whenever I get upset about my hairloss, I just have to tell myself, things could be worse. At least I'm not dying, and I have my health. Then I remind myself that I am a smart, strong young lady who is going to hold my head up high and get through this.
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Permalink Reply by Jane on
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I have learned patience and to be more demanding of my ‘friends’ in terms of accountability (True, people can be cruel, but as adults, they can choose to be kind, decent, ethical and tolerant).
but, also, I have learned to love myself best and to put my self 'first'.
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Permalink Reply by Bogie on -
During my impressionable teen years, I listened more closely to facilitators in sensitivity groups (a 1960s phenomenon), counselors, and writers who talk about real, honest, caring communication. As a result, I now usually support the underdog, the timid and insecure students of mine, those who have medical "flaws," and those who are teased or bullied. I have changed my employment from graphic art/illustration to teaching since I began working, and am now pursuing a special ed credential. I date men who others may not, because I recognize that Everyone has Something (so-called flaws or quirks)...and I listen more intently to what people tell me about themselves and their feelings. If I had NOT had alopecia, I may have ended up just as surfacy and critical as the others in my hometown/high school. Had I not sought out the kinder people from church camp (where the sensitivity groups occurred), I may not have attended so many conferences, seminars and trips with those people, and may not have developed my love of travel or my courage to move far from home to a state I had desired. I then may not have learned to try new things or new hairdos, or to encounter different ideas and cultures. Of course, knocking the surfacy people out of my life means my circle of contacts and friendships is smaller...but the realness and sincerity of those folk outweigh the quantity of others. And...if not for alopecia, I wouldn't have been able to talk to some deeper souls on this site...who "get it."
As for challenges...giving up activities where a wig would fall off has bothered me over the years (no hanging from trees, riding in convertibles, swimming, dancing dips, or somersaults). Packing wigs or trying to change them in a parking lot while travelling is a dilemma (esp. when going from a messy art day with students in my casual short red wig to a blonder, dressy long wig for evening, without going home to change in between). Varying hair color, style and length daily or hourly in a small town of rednecks makes me a bit nervous that I may be labelled a kook. Roving hands to my hair has always bothered me...will I be rejected Once He Knows?...so sometimes I avoid the very people I am attracted to (even though I accept many different kinds of looks myself), so convinced am I of eventual rejection. Maybe that's why I spend so much time in college (I am at my tenth college now), working, attending movies, gardening, reading, watching TV and talking to my family and close friends now at age 55. I am more sure that I will keep my ego intact with these activities...or that I can get something accomplished. It is hard to explain all this to haired females who might potentially be travel or social friends, and I definately have stopped associating in public with those who use their own hair as a competitive edge in flirting, thus leaving me in the dust. The biggest mysteries left are, where and with whom will my own edge of caring count most? Will my legacy of caring about others remain with my children and students, who all know about my alopecia, after I am gone?
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Permalink Reply by Linda on -
Alopecia has increased my acceptance of others for what I may perceive as shortcomings. Coping with Alopecia has taught me endurance, tolerance, self-acceptance, survival, self-love, confidence, the list goes on and on! Alopecia's positive and constructive lessons...no one is perfect, love them anyway, including yourself! Positive-beauty is me, you, everyone! Constructive-accept who you are and touch a life*live forever! Challenges-whew!-okay, does my wig look okay?-does my hair look okay?-will my wig come off if I ride that, do that, etc?-does he love me even though I have these spots?-do they know I have bald spots?-how can I be confident when I have bald spots?-I'm shy...etc. Wonderful discovery-I'm beautiful Bald and it's okay. Woeful discovery-shaving and maintenance of this Bald Look sucks, lol. Alopecia has molded me, I am confident in spite of, because of, due to the reactions of Alopecia. I hope to inspire others to walk in their Baldness with confidence and acceptance as I do.
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