Alopecia World
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My over-50-years-of-alopecia
When a local, low-cost basement hairdresser on my street noticed the quarter-sized bald spot, I was about 10. I pulled my long hair back over the spot, so no one ever knew in 5th grade.
When alopecia reared up again my sophomore year in high school, I got a fall (half wig), and again pulled hair from the forehead back over the matching wig, and secured my hair onto the fall with a large barrette. Large bobby pins held my fall onto my real hair, twisted underneath. No one knew. I did the same with a longer wig of real Korean hair for my formal dances. My real friends were from camp, and they lived in MANY cities in my state. I had a great time going to camp, conferences, traveling with them. At school, I joined many clubs, went to concerts, did the art for drama club.
When more bald spots appeared at the hairline, I got a full-head keneculon (sp) wig. No one knew. I wore this wig and the others through 2 years of college, and wore scarves or granny-caps (in style then) to bed in my dorm. Maybe I told my roommate...I don't even remember. I did my hair in the privacy of the bathroom. No big deal. I wore wigs on my dates. At 18, a dear guy (old church camp friend) told me baldness doesn't change love...and believed for the first time since age 10 that marriage may be in my future.
In college, I stopped the shots and prednisone, and my hair actually grew back. I got a Jane Fonda shag haircut and partied down at a fraternity mixer, proud to be wearing my own hair. I was about 20. Much more wine and beer were in my life, but less stress (being away from my parents)! Is wine the secret tonic? Ha ha.
Hair grew in and I made up for lost time in my 20s, moved to California, traveled, created art, started a Master's Degree...then got married (age 31) and had children. Neither kid ever had alopecia.
Hung around dogs, horses, an impossible mother-in-law and maybe a change in water at a country property. Husband and job scene, finances all became stressful. Started birth control pills. Oooops! Alopecia returned, went to totalis, universalis, then totalis. Husband left with the long-haired younger secretary after 15 years of marriage. No big loss...but head hair never really returned. At 47, alopecia was the least of my worries: I had one kid starting junior high and one starting high school, while the ex defaulted on child support. I did, however, start dating an old beau (who used to date me with hair when I was age 28-30) 10 months after my ex left. Yes, I was bald this time around!
My grandson doesn't have alopecia (he is now 10). However, he just got asthma, which is in the gene group with alopecia. I have also learned that 2 distant relatives alive now and possibly my toupee-wearing great grandpa have/had alopecia. Now I know where I got it. I still work, enjoy friends, go to events, shop, live. There are now TWO men who do not mind my baldness, and long-haired one who is trying to contact me long distance, even though he is married. Go figure. My age now? Nearing 62. Will I ever meet a person who wants to settle down with me as family? Not sure, but I do not spend my days whining about it. I get dressed and go to work, watch grandson's sports games, and cook nice meals for myself.
Stop griping and start living. You young 'uns have SOOOOOOO many more years to go, countries to see, jobs to try, college to complete, children and adults to enjoy, art to create. I want to hear/see your FUNNY alopecia challenges, witty comebacks, creative head gear photos, new romances, new businesses, etc. Every blog I write here is aimed at making others think, gain insight, smile, nod or find latest research. What are you giving to AlopeciaWorld, especially the children and teens, when all you do is whine and gripe? Be a part of what helps us all, and you may even help yourself. Think about how you sound, to us, yourself, your partner, your boss and coworkers, your potential dates. Think about the hopelessness you present to fragile, worried children, spouses, best friends and parents (who are NOT as informed or in touch with this baldness thing) when you obsess and cry constantly. This alienates them. There is a part of you that can still be a strong family member, listener, friend. I want to meet THAT part of you.
As to information...do you realize how many hundreds of discussions, groups, videos and blogs are already on here to answer your question? Go see the monthly archives! You will be surprised!
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Comment by gwen on September 10, 2014 at 9:57am
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PERFECT Tallgirl! Of all the posts I have read on this site, this is one of the best. I hope others reading this and may be trying to figure out how to manage this thing can catch some of your spirit:) Dealing with hair loss has taken me through hiding to now just being out front with people. Previously, I worked a male dominated job where I had to wear a hardhat. Everyone knows that after you have applied Derm match,Toppic, and painstakingly sprayed your pretend hair style in place...putting on a hard hat ends any pretense of hair. That hard hat will stay on the entire day, even through breaks, meetings and lunch, because the sweat and heat ruin everything. I had to quit that job...because of the hardhat and my inability to manage my "hair shame". I then went to work in a medical office where my camo, dust, spray routine worked pretty well for a while. However, when the hair on the whole top of my head finally gave up, there was no hiding it, I had to choose to go to work bald, or wear the topper I had purchased but not worn- not a great one and not really my color, but it was cheap online and I figured it would at least cover my head. I took a picture of my bald head, put that topper on and went to work. The girls I work with all thought I just got my hair done different...and liked it. I showed them the picture, explained what I had, and asked them to please let me know if my topper slipped or looked "wiggy" and needed attention, as I was new at this. They were AWESOME!! The doctors I worked for never even noticed and some of my patients commented on my great new haircolor:) I know there are many levels of acceptance and everyone is different, but when I am upfront with people it just takes the pressure off. And, it educates them about something they may know nothing about.
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Comment by Tallgirl on September 10, 2014 at 10:03am
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Wow, you guys! I went to bed even wondering if AW would accept my blog, then woke up to seeing my blog on the site, 522 views and all positive comments (above) by 7 am my time. I will start my day teaching with even MORE confidence! Can't wait to hear how all your days will go, too!
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Comment by Ruthie on September 10, 2014 at 10:07am
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Love your post! i agree we all need a lift, and I completely agree we keep going and have to think of Alopecia as another challenge, but not something that totally ruins our lives, it only ruins our lives if we let it. Thank you for the uplifting post this Morning, started my day on the right track. :)
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Thank you for an open and encouraging post. I have been dismayed by how much negativity there is in this group, though perhaps that is disproportionately due to a vocal few. Yes, losing hair is awful, but it is not the end of the world. I am a bald mother of a young daughter, and it is horrible to contemplate that, should she lose her hair, she would feel her life closing in around her. Yes, you probably can't be a hair model or shampoo tester if you don't have hair, but I would want her to believe she could be and do just about anything else, and I would want her to know to the very core of her being that she was as worthy of love as any other human being. Many people have worse things to deal with than hair loss, which does at least have the option of covering it up if it is so important to the individual that it not be seen. I hate being bald. I hate feeling less attractive, abnormal, damaged, whatever, but I never defined myself by my hair before I lost it, so why should I now? And if I have enough time and emotional space in my life to spend much of it feeling bad about my hair, then I clearly need a new hobby or to get out more.
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Love it ! So true :) hey we're stuck with alopecia but life doesn't stop. Thank you for sharing and reminding everyone to focus on the positive rather than the negative. There's always a bright side!
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I love your story. I am 24 turning 25 and I have had Alopecia now for just over 3 years, its a really hard thing for me to talk about, I haven't spoken to many about it, I hide behind wigs and hats.. I nearly have all my hair back and I just haven't been brave enough to go to work without a wig as of yet. I know deep down people will be supportive, well at least that what I hope.. Your story builds a slight amount of courage for me, who knows maybe soon I will be brave enough to see the world as I am naturally as I am..
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Comment by MJ Wrick on September 10, 2014 at 8:26pm
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Same gene group as asthma?? NOW I know where it comes from (& glad I didn't get asthma)....
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MJ Wrick I got a triple :) alopecia asthma and hay fever all immune related
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My family tree has the diabetes, arthritis and asthma cocktail.
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Wow! our lives are very similar although at 45 I have still have the husband and both of my children are in college now. Thank you for just simply stating the facts and confirming that we all go through what we go through with or without hair..its simply called LIFE! I actually had spots since 5, but no matter. My life is wonderful and would I want my own hair..duh!! of course I would but I could have so many worse things. after losing a parent to cancer and another to heart attack..alopecia is not so bad. thank you again this was very refreshing to begin my day :)
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