The Ups and Downs of an Auto-immune Disease, by my friend Gina Marie

boise lifestyle photographer: a woman’s victory over alopecia

I met my friend Michelle several years ago at the gym. I had seen her working out there for some time and one day she stopped me in the women’s locker room and said she had read my blog post about my weight loss and wanted to congratulate me and tell me that I look great! She was hugely supportive and friendly and I began seeing her more and more around the gym and around town. I did fitness photos for her and her workout partner and good friend, family photos of her beautiful family, and was invited to join her team for the Dirty Dash. Over the years, I have slowly gained back the 16 pounds I lost, plus some and I have always worried that whenever I saw her, she noticed; that it was the first thing she saw in me…my weakness. But she never acted like she thought any less of me or treated me any differently than that first day I met her. I know, now that Michelle sees people beyond their appearances because that is what she expects in return.

The irony is, that while I was so worried Michelle was judging me based on my appearance, I was doing the exact same thing to her. You see, from my point of view, I thought that Michelle has been living a charmed life. She is successful at whatever she does…whether it’s getting annihilated in the gym by maniacal trainers or killing it on the golf-course. She’s competes in Nordic ski racing and owns her own fitness company called SUPerior Fitness where she runs a form of exercise class on a stand-up paddle board. I tried it once…it’s not easy! Her husband is a well-respected surgeon and they have a beautiful daughter. They live in a beautiful home overlooking a golf course and she’s always strikingly dressed. She recently brought the brand Nerium International Skin Care to Boise, built a team and within months, earned a Lexus as well as a position as the regional manager. She’s beautiful, has a killer body and to top it off is genuinely nice and cares for others. From the outside looking in, her life looks perfect.

Then one day, I read her Facebook post about Alopecia Areata :  “Alopecia Areata / hair loss effects over 35 million women and there is no cure. It has played a big part in my personal journey and I know I am not alone. I am grateful for all my husband, family and close friends support. XO.”  Alopecia Areata is an auto-immune disorder where a person’s immune system for some unknown reason attacks their hair follicles leading to baldness. Sometimes it leads to complete baldness of the head and even facial hair and other times it just attacks random parts of the scalp and face leaving the person with patches of baldness. It comes in waves. A person can have a bout of Alopecia, lose her entire head of hair, grow it back and be fine or possibly lose it again. It affects 35 million women and 1 in 5 people with Alopecia have inherited it genetically. There is no cure for it and it can affect a person at any age. People with Alopecia are perfectly healthy otherwise.

Knowing what alopecia is I was first surprised by her announcement because I would never have guessed she was experiencing hair loss, her hair always looked thick and full to me. And the second thought I had, was not a feeling of pity for her but admiration that she would have the courage to tell everyone on Facebook about it. It prompted me to contact her and ask her if she would be willing to let me feature her on my blog and share her story. She was more than open to the opportunity, in hopes that she might be able to help someone else suffering from the same thing. The motivation behind her post was that she was frustrated about her circumstance and she didn’t want to hide it anymore, being authentic and real is important to her and so she decided just to let everyone know what she was going through. She confided that she felt embarrassed by her hair-loss but that her husband told her that embarrassment is something that should be felt when a person does something wrong, and she hasn’t done anything wrong. Having Alopecia is just a condition she has and one she has not control over.

Michelle first experienced Alopecia at the age of five. She lost her eye-lashes and had quarter-sized bald patches all over her head. But she didn’t really care about it, she says, she didn’t really think anything of it. Only when it happened again, her senior year in High School did it start to affect her, she thought for sure she would go completely bald. After her bout with Alopecia in high school, her hair grew back thick and full and stayed that way until about 4 years ago when she started losing it again. It started with the loss of one eye-brow. She spoke to me about being so embarrassed by it and feeling like she couldn’t let anyone look at her. She remembers always filling in the line of a false eyebrow with a pencil and even tried a sharpie marker…she tried everything and wouldn’t even let her husband see her without it being filled in.  It’s so hard for me to imagine that this confident, successful woman who stands before me had felt this type of panic when being around other people; worried that the first thing they will notice about her is her flaw, that missing eyebrow, or thin patch of hair.

Then she started losing patches of hair and for the past four years she has been losing patches of hair on various places on her scalp. As they grown in, another patch goes. She says some days when she runs her fingers through her hair, and clumps of hair fall to the ground around her she freaks out. She has a ritual of collecting the hair and putting it in the sink to see just how much she’s lost. When she sees the sink full of hair, her heart feels like it is pounding out of her chest and all she wants to do is curl up on the floor and cry…in fact she has. There have been dark moments that have led to thoughts of just leaving…disappearing and waiting for the hair loss to end. “When I am shedding I go to a really bad place, I don’t want anyone to see me.”

As a woman I know what our hair means to us, it’s our “crown & glory.” In many ways it’s a part of our identity and our sensuality. Many of us take our heads of hair for granted, complaining it’s too curly or too straight, too limp or fine or too thick and wavy; we perm it, color it, and spend hours styling it, we have good hair days and bad ones…and let’s face it some of our “bad hair days” leave our whole family frustrated! Hair accessories are a multi-million industry. I cannot personally imagine slowly losing it bit by bit…without having the least bit of control over it. My weight, I can control. Michelle’s hair loss, well, she’s tried every treatment, some with really hard side-effects but very little success in stopping it. She says, “It has a mind of its own!”

So how does she cope? First, when she has succumbed to the darkness, she thinks of her family and how much they love and support her, and then she thinks “What? Am I just going to abandon my family?” They love her for who she is, and so she picks herself up of the floor and concentrates on that love and focuses her thoughts on them. She has recently started hypnotherapy which she says is a form of guided meditation that has really helped her change her thinking. Instead of focusing on how much hair she’s losing she thinks about how much she still has and she’s grateful for that. Bit by bit she is noticing there have been fewer and fewer strands in the sink each morning. At the very least, whenever she feels her heart start beating and the anxiety intensifying, she has methods for calming herself down. She also has bathroom drawers full of tools that she uses to camouflage the bald patches; everything from vibrantly colored head-bands to spray-paint that blends in the fine white hairs that are growing back in. She has several hair pieces that are easy to style and put into her hair to cover up the bald patches and she even has a custom made-hair-piece made of real hair to wear if she chooses, although she prefers the hair-pieces and headbands. She still doesn’t feel comfortable going without her tools so when it comes to swimming she gets nervous about how she will cover up those patches. She tells me that the more tools she discovers, the more she gains a sense of power over Alopecia and the more she wants to help others who are facing it.

She feels like she is finally coming to a place where this disease is making her stronger. A lot of this mindset has come from the work she does with Nerium International. She is learning to take control over what she can control and let go of that which she can’t. She has always held herself up to extremely high standards while holding everyone else to lower ones. She is coming to the place where she is lowering the bar on herself and raising it for others. Her goal is to eliminate the high goals she sets for herself but to help other people win. Because she has experienced years of feeling weak in dealing with this disease she’s gained lessons in humility and compassion. But the real lesson she takes from all of it is it live life in the moment. “Be real, be authentic, and be in the moment. Trust that people love you for who you are.”

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This is Michelle’s daily ritual of gathering her hair in her sink to scope the damage. Today was a good day, there was just a handful. Normally, she says, there is hair everywhere, that it just keeps coming out…this is when she starts to panic.boise_lifestyle_photographer117

Because Michelle loses her hair in patches, she has different lengths growing back on different places on her scalp. The hair comes in white and frizzy, so she has to daily work to camouflage it in with her long brown hair. I think regardless of what Michelle’s hair looks like, she is absolutely beautiful!boise_lifestyle_photographer121

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The next step involves curling her long hair as well as her hair pieces.boise_lifestyle_photographer123 boise_lifestyle_photographer124

Here she blends the white fine hairs in with a brown powder. The tools she’s discovered to camouflage her bald spots give Michelle a sense of power of Alopecia and she wants to share them with other women who may be experiencing the same thing.boise_lifestyle_photographer125

The hair-piece is in! Take that Alopecia! I would never know…would you???

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Michelle’s drawer full of colorful head-bands.boise_lifestyle_photographer128

Michelle in her crown & glory…gorgeous!boise_lifestyle_photographer130

The lesson I walked away with from this, is that no matter what a person’s circumstances look like from the outside, you just never know what they are going through in their private lives. Everyone has a cross to bear. Leave a comment for me or Michelle. If you have Alopecia and want to send a private message to me or Michelle, feel free to contact me through the contact page on my website. Or if you are carrying a cross that is becoming burdensome and you want to share your story, contact me as well. I believe sharing the load each other bears makes us all stronger.

 

16 thoughts on “The Ups and Downs of an Auto-immune Disease, by my friend Gina Marie

  1. That was wonderfully written and I never would have known if I hadn’t read this. It’s so true and always good to be reminded that no one is immune to struggle. Michelle is a beautiful example of one who has made a choice to prevail and she does it with grace. Thank you for that, Michelle, and thank you Gina for your excellent delivery.

  2. Michelle, I thought you were amazing before, and now. . . I am beyond impressed. If prayers can heal, I am sending them your way pretty lady!!

  3. While you (Michelle) have shared that you have Alopecia areata with me, I never knew how it affected you on a daily basis. This story is very educational and a true testament to your beauty inside and out. Thanks for sharing Michelle, it not only makes you stronger, but it will help someone else with Alopecia areata strong too.
    XO – T

  4. Beautifully written and illustrated and huge kudos to Michelle for her bravery. My mom suffered from this, but it was never diagnosed. She blamed it on “the chemicals” from the perms that she started getting at the salon when she remarried in her late 50s. Before that she had always managed her hair her own way. She stopped going to the hairdresser but the hair kept falling out. What had once been a thick mane of dark brown became a few thin strips of lank hair that she tucked under a wig. After a few years her hair did begin to grow in, but like you said, it was white as snow and baby fine. While she blamed chemicals, I always wondered if it wasn’t caused by nerves (from the new relationship) or a combination of nerves and hormonal changes following menopause. Whatever the cause, it sure is a trial for the person effected.

    • It surely has a mind if it’s own. Stress/nerves do play into it but there is a genetic component as well that kicks it off.

  5. Beautifully written story. When I moved to Las Vegas. I was trying to find a new stylist. I looked around at our club we belonged to and saw thr hair cut I liked the best, so I decided to find out where my new friend, got hair cut, colored,and blown dry. I asked around and my others friend, they replied, that is a wig she wearsof the time! IwS shocked,it yo looked perfect,that’s the style I want! Then I found out my dear newfriendwS completely bald. She wore a different wig all of the time! She was fighting that same desease. She as always very sweet and acted very confident! Wore a hat,playing golf always,with her beautiful wigs she made the best if it. I remember asking her who did her hairwig,why she had so many different wigs! She had different styles for different events she went too! She told me she was completely bald! When she was a little girl she started loosing her hair. Then after a few years. Her hair stopped falling out, then after hight school, and getting married, she started loosing her hair again. Her family was very understanding and sweet. She did look beautiful! Her wigs were drywall made and styled. She wself confident. Her husband had several affairs,so it wasn’t easy for her,but then he went back to her and everything is fine! She’s a very beautiful lady!
    I know Sheryl knows I had a stroke. I’m very self conscious,about how, I look and walk. But I’ve worked very hard to get myself back to normL,but it still hasn’t happened. My husband is very sweet and always telling milo ok beautiful and to get over it,but it’s not that eSy. My gate isn’t very normal. I have a long way Togo to get that back. My PT. said I will never be my normal self, but I will be a new normal! Slim dealing with that! But so hPpy to be alive, and not dealing with other serious tissues people deal with with

    • We seem to amplify our deficiencies and compare those against the very best in someone else. Maybe you, your gate and a high fashion model perfectly walking a runway. Me and my hair when it is its worst against a Pantene hair shampoo ad. Let’s stop it!

  6. I saw a like on FB for this article, and I have to say, I am always so touched to hear others stories and the courage Michelle and others have to expose their insecurities and tell their stories. I barely know Michelle, but we went to Jr. High and High School together, in an upper middle class area where insecurities were the norm. I have read a few other stories about fellow classmates that really opened my eyes to their struggles. Thank you for sharing this as it brings me out of myself and makes me compassionate for all people I meet. Again, to bare it all, it shows what a strong woman she and the others are. Great blog post. Thank you.

    • Seems like nobody is immune to not getting dealt something in life but what matters now is how we can relate to our card(s).

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