My personal story with scarring alopecia has lows but also light. It is fascinating how God place the people, experiences, timing and circumstances to mold you to your best version. As a teenager I was not a fan of my curly hair. I had to use many products to keep it in place. In my 20’s I decided to pull it back on a pony tail with middle part. That was “my look” and I was in control.
One day at a former job I met a friend of a colleague who was a hair dresser. It was the first time I heard of “Japanese hair straightening”. I was so excited that finally I will be able to have straight hair! Isn’t it interesting how we tend to criticize what we have and always want something else?
Roughly a decade later, my sister is inspecting my hair for any greys. We used to do this session once a year. One would carefully inspect the other’s hair and pull out any greys found. I used to call it “the monkey spa sessions”, as we were like monkeys inspecting each other’s hair carefully. It was a funny thing to do together. She suddenly asked me if I had hit my head somewhere. I was unsure why she asked that. She mentioned I had a spot with very soft skin, like a scar. I had never hit my head open. I quickly forgot about it and continued with my life.
The following years I would start noticing my ponytail getting thinner and thinner. It was mostly when washing my hair that I’d have a visual of the amount of hair I was losing. Finally one day I inspected my head carefully, first with my fingers, and then with a mirror… there it was, a dime size area with no hair with very soft skin. It was then, in 2014 that I decided to see my GP about this. He mentioned there was a scalp specialist in the city, but the waiting time to see him was over a year! I was not willing to wait that long, so agreed to be referred to a dermatologist.
Little that I know, few weeks later I was going to face the unknown diagnosis which brings me here.
When the dermatologist inspected my head he said “I need you to see the scalp specialist”. I told him it would take a year, as per my GP. When the dermatologist told me he would do an urgent referral I got worried. Did he say “urgent referral”?!
A couple of weeks later I faced a day I remember vividly. I met a nice female doctor who happened to be Dr. Shapiro’s fellow. She carefully inspected my scalp… “I suspect you have Lichen planopilaris”. “Lichen-what?!” I thought. She mentioned other things but what stayed in my head was “it causes permanent hair loss” and “there is no cure”. What?!
Dr. Shapiro arrived and agreed with her assessment, wanted to take a biopsy and would start the treatment right away. What was happening? A biopsy? Treatment? Injections?
I left the clinic with stitches on my head from the biopsy, a headache from the 20+ injections I had on my scalp, a little paper with “lichen planopilaris” written on it, and overwhelmed. I walked a couple of blocks in tears. I was scared. I was in shock. I was single and thought “who is going to love me bald?”. I was yet to be awakened and be conscious about the importance of acceptance and self-love. Despite the pain and fear… I looked up at the sky and was thankful it was not a life threatening diagnosis. I went home and started my research. “Unknown cause”. “Rare disorder”. “Permanent hair loss”. I went to bed crying and feeling so lonely. I had nobody with the same diagnosis to talk to.
The following months I tried the medications, which included blood work every few months to ensure they didn’t affect my liver. I had nausea daily. After few months I decided to stop the medications. After all, there is no cure, and the side effects were affecting my daily life. It was the first step of a long journey of acceptance.
The hair loss continued. It became a habit to check the back of my head with a mirror before heading out. The use of hairspray and hair fibers became a norm. Walking outside on a windy day made me anxious. I’d pray the hair “curtain” stayed closed.
I never asked “why me?” There is no point. Accepting the reality, one day at a time, was the only thing I could do. My family and close friends knew my struggles. It was difficult to keep hearing “… but it is only hair”. I struggled with self-esteem most of my life, and having scarring alopecia made it harder to love myself. Some days I would feel so lonely and ugly. Nobody would understand that hair helped me feel feminine, and gave me some confidence.
On the other side, I tried to put things in perspective. I did not minimize my emotions, yet I chose to be grateful not to have a more serious condition. It was a constant rollercoaster.
Eventually I dated someone. I knew I wanted to share my hair loss struggle early on. If this was going to scare him, he was not the person for me. When I confessed about my alopecia I was scared of rejection. The information didn’t change his interest in me. The reality is I was more worried about my hair loss than anyone around. The relationship did not work out in the end, but it had nothing to do with my hair loss.
What an awakening moment… if I wanted someone to see my inner beauty and not judge me by my hair loss… it had to start with me. Don’t focus on what you can see, focus on what you can be with the circumstances the universe gives you. My self-care, self-love, self-acceptance journey would not be the same without experiencing alopecia. I am no less than who I was yesterday.
The hair loss, pain, itchiness and redness are all real. How do I manage my LPP? I ensure I work on self-care on a daily basis. I take time for meditation, journaling, and I am gentle with my body. When I shower I massage my scalp and send love. I understood that self-care and self-love is not selfish. I am more aware of what foods I eat. I avoid dairy, sugar and try to eat as clean as possible, but allow myself to enjoy treats once in a while. I have found support groups through social media and ensure I express my emotions, but don’t hang on to them for too long.
I am aware alopecia’s acceptance journey is long and personal. I recently chose to buzz my hair off and no longer use my energy picking up all the hairs in the shower, or spending time fixing the hair to cover all the bald spots and feeling sorry about it. Now I see my reflection in the mirror and finally see me with no distractions. I have lost hair, but not my femininity. Femininity, beauty, acceptance, strength, all come from within. I believe we are all a unique work of art, beautiful creations. I don’t feel sorry to see my scalp as it is my soul what makes me shine.
Alopecia has shown me a new purpose. To inspire others and help them with their self-esteem journey. Trust your own personal process and be patient and kind to yourself along the way. Beauty doesn’t follow a mold, beauty is your own glow. Keep glowing! You are not alone.
Sandra P.
@AlopeciaGlow
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