My Personal Story with Scarring Alopecia

Updated: Nov 20, 2020

My footprints on a path of self discovery and healing one day at a time...

Standing in front of my mirror with just the sound of my own breath, I faced my new truth square in the eye – my balding patchy inflamed scalp. No clumps of hair on my pillow or strands in my brush, this change was swift with no warning. My hair was never thick, I’d describe it as average, a 4c texture that was typically nape length. I always had various hairstyles growing up, including the 80's jerry curl, 90s box braids, and the early 2000's molded pixie cut. My hair loss struggles began I'd say, in my early 20's and with it came inflammation, sores, and so many unanswered questions.

The diversity and fun I had playing dress up with my hair was now gone. I know your hair doesn’t define who you are but for me it became a chore of how do I hide thinning bald patches?! Hmmm I thought...maybe if I put some mascara on it…you know the waterproof L’oreal one in case I sweat. Oh I know... I’ll just glue a piece hair weave over it…ya that should do it - until the wind blew. At one point I thought I was the "MacGyver" of hair, even going as far as cutting pieces of hair extensions into small fragments and applying traces of glue on the bald patches then sprinkling the hair fiber's on my scalp like I was garnishing scallops with parsley.

I cried a lot and smiled even bigger. I used my humour and wit to hide the pain tormenting me inside. I felt so unattractive with a heavy sense of guilt and endless what if scenarios plaguing my mind. I harboured resentment and envy towards others who had hair and even cursed women in my head who complained about how their thick hair was so hard to manage. Meanwhile I’m over here wishing I could just have hair – I wondered if they wanted to trade places with me if they knew my secret?

My day to day was a struggle to say the least. My alarm clock was my daunting wake up call that would trigger my self diagnosis routine as I brushed my teeth and examined my scalp before getting into the shower. Turning on the television, it seemed like every commercial was either a shampoo ad or some chick doing the perfect yoga pose with her hair tied in a soft bun. Even the commute to work took a toll on my fragile mental state. Sitting on the train, trying to bury my head in a book or get lost in my music, I would occasionally glance up noticing the change in passengers with each station arrival.

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My glances bounced from the girl in front of me twirling her fingers through her hair to the elderly women with the perfect roller set, the guy with the fresh barber line-up to the teenager with the fluffy bedhead. Honestly, I just wanted my hair back. I wanted to feel beautiful again and not feel as though I had to perform magic tricks just to get out the damn house. Off to work I went, and having to endure, even to this day the comments from people who without any awareness say “oh a new hairstyle Christal?.…that’s different…what’s up with your hair, is it real? And the infamous, can I touch it?”…trust me the list goes on. I’m not sure why some people think its acceptable to make such insensitive remarks without any common sense of how disrespectful and rude their questions and assumptions are. No, you can’t touch my hair, what difference does it make if its real or not, and so what if it’s a new hairstyle - it still baffles me even as I write this. Its funny how people have no boundaries, but I’m the one that has to exercise restrain with my politically correct politeness otherwise I am labelled with having an attitude problem, go figure.

Let me tell you, I can make anything work when it comes to my hair and lack there-of. I found creative ways of hiding the exterior by doing headwraps, hair pieces and wigs but my internal self was in utter chaos. I can’t really tell you when the shift occurred, perhaps I can define it as my rock bottom moment, where I was just so defeated. I just had enough. I accepted the fact that some areas of my hair would never grow back but it was ok because my hair was just a fraction of who I was. I needed to purge the toxicity within me and I had two choices: 1. I could let my circumstances be the fuel of negativity in my life or 2. Use this as an opportunity to delve deeper and bring to light core issues that extended beyond hair loss and rid myself of doubt, sadness, anger, low self esteem and uncertainty. I chose the latter and so the journey began.

I saw numerous specialists and underwent various tests including scalp biopsies, blood and allergy testing and was emotionally and physically drained. I was diagnosed with Central Centrifugal Cicatricial Alopecia (CCCA), a form of scarring alopecia. This type destroys the hair follicle and replaces it with scar tissue which results in permanent hair loss. In some cases, it can be associated with severe itching, pain and burning and progress rapidly. It can occur in healthy men and women of all ages and is worldwide and the causes are not clearly understood. Common treatment options include anti-inflammatory oral medications and topical treatments including steroid injections to the scalp. Their goal is to decrease or eliminate the inflammatory cells that are attacking/destroying the hair follicle but there is no guarantee of their effectiveness. I suffered for several more years doing a variety of home remedies to try to keep the inflammation under control with minimal success. One day while surfing the net I came across a naturopathic doctor and a medical MD that specializes in helping women just like me. The naturopathic approach was to help women who have hormonal imbalances, anxiety, insomnia, autoimmune diseases and other conditions that impact women. The medical doctor's speciality was to help those with chronic complex conditions related to external exposures with the aim of preventing further problems, promoting health and well being and improving coping skills. Both practitioners offered more of a long-term approach that included an extensive review of my diet and lifestyle. Though neither offered a magic pill that would cure my hair loss, they both offered treatment options that would help reduce the inflammation and set me on a path of a healthier balanced way of living. I should mention that I wasn't sleeping much, I was extremely moody, I didn't eat very healthy and found comfort in a lot of junk foods. Since my hair loss was a combination of my internal system being so out of whack, long term over processing of my hair, stress, anxiety, a poor diet, and lack of sleep just to name a few, I had to remove all triggers that seemed to provoke my inflammation and this included gluten, dairy, and a reduction in my sugar intake. But everyone knows that sugar makes everything feel and taste better especially when its glazed with more sugar!

Armed with my cheat sheet of “inflammatory foods to avoid” from my doctor, I remember my first trip to the grocery store as a gluten n dairy free newbie. It was overwhelming and stressful to say the least. I didn't have a clear understanding of gluten. Dairy was a bit more straightforward or so I thought but I didn't know that gluten and dairy were in a lot of my everyday foods. A trip to the store that would normally take me 30 minutes tops took forever! I was reading the ingredients on everything, and when I did find a "gluten free section" the selection wasn't very much and who the heck was paying $4.99 for breadcrumbs, $7.99 for bread (that was the sale price mind you) and $5.99 for cookies – not me! I refused to pay such exorbitant prices and ended up with fruits, veggies and meat (boorring!) but it was a safe bet. I almost gave up. The thought of having to learn to eat a different way was almost too much for me to bare, but I thought, you know what you made it this far, you see a light at the end of the tunnel and its going to take some work to get there, but you can do it. So I took a deep breath ditched the pity party and began researching everything there was to know about gluten and dairy and how to spot it even when it wasn't so obvious. Quick disclaimer: removing gluten and dairy helped me tremendously and may not be a solution for you, we are all different and what works for one may not work for others.

I've realized that life is a journey and anything that stays the same never grows, so by me embracing the quarks with the knowing that each day may pose some challenges it was a necessary part of my evolvement.

Therefore, I pen this open letter to those of you who are going through hair loss. You may feel less attractive, angry, confused, frustrated and alone, but you aren’t. I see you because I am you. I know it may be hard trying to express how you feel because no one can truly understand the hurt that plagues your core, but I can compassionately relate. I am here to tell you that you are beautiful with or without hair. What defines you is your character, how you treat others, your core values and knowing that you can navigate through any storm and smile at the rainbow waiting on the other side. Once I started to acknowledge my self worth, my walk became easier, and I even noticed a new pep in my step.

Guys, my hair is shaved, my scalp itches daily, I don’t eat perfectly everyday and I’ll be the first to admit I have my moments where I consume things with gluten and dairy (if you wants specifics Cinnabon cinnamon rolls are a weakness). I wear wigs and head wraps, try my best to ignore stupid comments, still haven’t worked up the courage to rock my bald head to work yet, and still take trips to the doctor’s office to help keep the inflammation under control. The point I’m trying to make is that I’m imperfectly perfect. I think this happened to me for a greater purpose and has become a blessing in disguise. It set me on a path onto deeper spiritual growth, the desire to help others and I am learning to embrace and love every part of me. This blog represents my story of how I am healing my mind, body and soul one day at a time. If you are ready to embrace a new outlook on life, I’d love for you to join me. So, lets pick up our crown shall we because it should never be tilted, and neither should our smile.