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Joann - Alopecia Areata - My Journey To Acceptance

Discussion in 'Tell Your Story' started by Joann, Jul 13, 2017.

  1. Joann

    Joann Moderator

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    Hi Girls,

    I haven't posted in awhile. I had some health challenges and I just needed to take some time away. Many of you won't know me so I thought I would re -post my story here:

    My journey with Alopecia Areata has encompassed almost my entire lifetime. I was first diagnosed at 4 years of age.

    With the first bout of Alopecia Areata at 4, I lost all my hair. I wore hats to kindergarten. I had remission and regrowth by 6 years of age, but continued to have ongoing bouts, some severe, with Alopecia Areata throughout my childhood, teen, young & older adult years.

    I can’t remember how I felt at 4 about my hair loss, but by 8 years of age I was very shy and self-conscious about it. I felt very, very alone. I knew no one else who had Alopecia Areata, and it wasn’t something that was discussed in my family. I know my mom had a hard time with it because she would often mention what “beautiful” hair I used to have. I remember feeling ugly when she would say those words.

    Alopecia Areata was my guilty secret. I was always thinking & worrying if someone “knew”. It was quite a burden to carry, especially as a child and teen when you just want to be like everyone else. Going to a hairdresser, having someone touch my hair, being asked why I was wearing wig every day would fill me with dread. I carried on a best as I could.

    I met my husband to be in my late teens. At the time, I remember having a bald patch right at the front which I disguised with creative styling. One day we were out and the wind was blowing. The wind. My enemy. I was frantically trying to hold my hair in place and he said to me: “Don’t worry. I’ve seen that spot before.” He loved me for me. Definitely a keeper.

    He was my rock, and the only one I could turn to when the Alopecia Areata became severe again in my early 40’s. Still, he could not fully understand the devastation of losing my hair day by day, strand by strand. No way was I going to give up on my hair. I didn’t know or want to know that I was fighting a losing battle. I tried treatment after treatment, with a horrendous allergic reaction on the last one available to me.

    The hardest part of the hair loss for me was accepting I had no control and never did. All the regrowths and remissions I had experienced throughout the years were not because of anything I did. It was simply Alopecia Areata doing it’s thing. I might have spared myself much grief had I only realized that sooner. I guess I just wanted the reassurance of knowing that I did everything I possibly could.

    Cutting off the last lock of hair did bring me some peace. You can’t stress when there’s no more hair to lose. I was sad and depressed. It hurt to look at the stranger in the mirror. I did look and feel better with my wig on, but it could not compare to having my own hair. I didn’t want my husband or children who were 14, 11 and 8 to see my bald head. I wore scarves and head coverings in the house.

    Alopecia Areata can be very cruel. It took my eyebrows and lashes too. Losing all my hair was difficult, but losing those were even worse.

    In March 2004, I started going on the internet. One day I typed “alopecia areata” into a search engine. One of the sites that showed up was an Alopecia Areata Support Community.OMG!!!! I started to read the messages and look at the pictures.I met a woman who lived about an hour’s drive from me. It was like being rescued from a deserted island for me.

    I started to heal. To be able to express my grief and fears, have others who understood how I felt, helped me move toward acceptance in just a few months than all the prior years had.

    I joined NAAF shortly after. I can’t express in words the peace that came over me when I saw so many other men, women and children who looked like me. What an experience!!!

    When I sat in on the Women & Alopecia Areata support session there and told my story, it released a flood of emotions in me. I had never let go like that, and it felt so good to feel safe doing it there. They hugged me and there wasn’t a dry eye in the room. Everyone got it.

    It was step by step to full acceptance from that point on. Each conference I attended, I came home stronger. At the first conference I arrived in a wig. The following year, I was in bandana and went out in public for the first time in my natural bald state. I felt as free as a bird. A wonderful lighthearted feeling.

    I attended my 10th conference this year. I no longer feel challenged by my baldness. I know I look different from most people, but inside I’m who I’ve always been. My lack of hair doesn’t change that.

    I have reached full acceptance with my Alopecia Areata, late in life, but much sooner than if I had remained coping on my own. I no longer need support for myself, but at this time I’m helping those newly diagnosed and struggling. I want to give back what was given to me. True happiness and joy in living, confidence in myself, release from my fear and shame of others judging me. If I can make even the slightest difference to someone struggling toward their own acceptance and peace, there’s no better feeling for me. There is so much strength to be found in facing something together instead of alone.

    We often look at the negatives of having hair loss but, there is one important positive too. I have met some of the nicest people from all over the world, good friends, whom I would have never known otherwise if not for Alopecia Areata. That would be a greater loss than my hair I feel.

    I’m very glad that with the awareness and support available nowadays, no one newly diagnosed with Alopecia Areata has to cope on their own as those of my generation did. The children and young people,especially, are able to meet others their own age. How wonderful is that? They will grow up to be strong and confident adults.

    As someone whose journey to acceptance and peace with Alopecia Areata is at an end, I’d like to pass on what I've learned, with hope that it may help others on their own journey at this time.

    I've learned there are no quick answers or solutions to hair loss, and that good health is more important than hair, hands down.

    I've learned I'm not alone. There are millions of men, women and children who are living their lives with hair loss, as I am. It’s wonderful to have support in the hair loss journey, but even more rewarding to be able to give support to someone who needs your help.

    I've learned it is best to take it day by day where hair loss is concerned, and not cause myself unnecessary anguish for what may never happen and what I can't change, even if it does. The stronger emotions relating to hair loss do get better, and the sooner you can take control, the less hair loss will control you.

    I've learned that people love and care about you for who you are, not for what you look like. Having hair loss can show you who your true friends are.

    I've learned that at 65, I don't look as I did in my 20's and 30's and hair loss is just a small part of that. I may look different than other people, but it has nothing to do with what I accomplish if I set my mind to it.

    I've learned that attitude can go a long way to how others will react or relate to me. You will never be exactly as you were before the hair loss, but a much stronger & more compassionate person.

    I've learned life doesn't wait for anyone & that there is no going back, only forward. Having hair loss is life altering but not life ending. Life is precious, and we have no way of knowing how long we will be here. We have to take each day as the gift it is.
     

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  2. dancer

    dancer Experienced Member

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    Hi joann!
    Sorry to hear you have been unwell, don't check the boards much anymore but e mail alerted me you were back !!
    Hope you continue to get well ! You have been missed here !
    Hugs dancer x
     
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  3. Joann

    Joann Moderator

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    Hi my friend,

    It's been a rough couple of years which has made me realize even more so that good health is much more important than
    the amount of hair on my head. In hindsight I could have spared myself a lot of anguish over my hairloss , in my younger years,had I fully realized this.

    It's so nice to hear from you!!! I have missed being online and helping others with their own struggles with hairloss and just keeping
    up with the friends I have made , like yourself, online.

    I hope you have been keeping well . I'm going to try to be present more often now.

    Hugs,
    Joann
     
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  4. dancer

    dancer Experienced Member

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    Hi Joann

    It's been a rough couple of years I was finally diagnose with autoimmune postural orthstatic tachycardia syndrome and CFS VV syncope after being housebound for many months . But on a positive note I found out what I was dealing with and whilst my life has change dramatically in every way it is not all bad !!

    Out of every bad situation we can learn new skills and strategies for coping I thought alopecia had taught me plenty about myself but obviously not enough !!!

    I practise mindfulness daily to help me deal with symptoms and it has helped by bringing purposeful meaning to my life. My lifestyle has changed dramatically but it too has changed my perspective , I have time to appreciate the small things in life that can just pass us by, I suddenly appreciate just a cuddle on the sofa with hubby and a movie something I couldn't do for a long time . I am learning to live with it through pacing and medication and I have good and bad days I just go with the flow . I am at least back working part time and I now run my house again

    Your words live every day as though it were your last often pop in my head when I feel very challenged by frustration ,

    To all those ladies with hair loss , this is a difficult journey with a variety of emotions and acceptance takes time but please don't don't let it stop you being who you truly are or what you want to do , you never know what lies ahead make the most of your life with family and friends, those who truly care will be there for you ! Life is precious !

    Love to all
    Dancer
     
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