My Story is a series where people with physical differences share a personal story or experience that relates to their difference. We kick this series off with a story by Teresa Hill Flannery.
My Story, My Life with Alopecia Areata
All the way back? Back to 1975?
Back to the day my Mom discovered the first small, round bald patches lurking in my Dorothy Hamill wanna-be crop of brown hair?
She must have been a little alarmed and more than a little tired. After all, she had 6 other kids all under the age of 14 and another one on the way. Add to that, I had just spent the better part of my first grade year seeing doctors and having tests run in order to diagnose and treat what turned out to be a non-functioning thyroid gland.
My parents had spent months hauling me to and from The Texas Children’s Hospital and listening to doctors explain how their daughter “could have been a retarded dwarf” (MDs were not very PC back then) were it not for my father looking across the crowded dinner table one evening and saying, “Mary, that child doesn’t look right.” His delivery may have left something to be desired but his instincts were spot on.
But that was last year, I was good to go now; taking my Synthroid daily and climbing my way back up the growth charts and all over the jungle gym at school. Honestly, as an active 7-year-old kid, I was supremely uninterested in hair loss, mine or anyone else’s. I enjoyed the relative freedom that comes with being a younger child in a large family. I had dependable, educated and loving parents, siblings and friends to play with, and a safe neighborhood to explore. Heck, I had doodle bugs to catch, backyard forts to build, and hours of Gilligan’s Island to watch. However, my Mom knew she couldn’t ignore it so off we went to another doctor’s appointment.
The first Dermatologist we saw – lucky for him I cannot remember his name – was tedious and patronizing and clearly uninformed. After a cursory glance at my scalp he declared that I was no doubt under stress at home and pulling my hair out in my sleep. He recommended that I wear a shower cap to bed and that my parents seek counseling (no amount of calm responses from my mother could convince him that my happy parents were not headed for divorce).
I shot my mother a look, a raised eyebrows “this man is a lunatic” look, and she countered with the universal bug eyed equivalent of kicking someone under the table. My mother then thanked the doctor for his time and I managed to keep my mouth shut until we walked out into the hallway where I immediately blurted out, “I AM NOT PULLING MY HAIR OUT IN MY SLEEP!” My mother simply said “I know, honey, let’s go find another doctor.”
The next Dermatologist was able to accurately diagnose my Alopecia Areata, an auto immune disorder wherein the immune system mistakenly attacks a person’s hair follicles which causes the hair to fall out. It does not hurt, does not make one ill, nor is it the harbinger of more sinister things to come. My parents were relieved but bewildered. The patches increased in both size and number, mostly along the hairline over my ears and the nape of my neck. My mother let my hair grow out and when I wasn’t hanging upside down on the monkey bars or jumping on the trampoline the bald areas were not too noticeable.
I continued to be unfazed for the most part but my newly minted teenage sisters were fascinated in a horrified kind of way. Elizabeth, the oldest, was probably 14 at the time. Whenever she had friends over to the house (we always seemed to have had extra kids running about the house) she would call me over and lift up my hair with a flourish and say “LOOK!”.
The other girls would recoil and gasp, which I think was very gratifying for Elizabeth. I had mixed feelings myself, vacillating between feeling truly exceptional (with a superpower no less to keep silly teenage girls at bay) and feeling like a Circus side show attraction.
Next in line was my sister, Margaret. A very dramatic 13-year-old. I think, despite multiple reassurances from my parents, she feared my Alopecia was contagious since I do not recall seeing much of her during this period. She spent a great deal of time upstairs in her room repainting the furniture and listening to Linda Ronstadt and Dolly Parton.
Our new, more knowledgeable Dermatologist suggested a few treatment options (sadly, these are the very same limited options offered Alopecia patients today, 35+ years later). First my parents tried the topical creams. Two to three times a day or whenever time and offspring allowed, my mother would sit on the hearth in front of the fireplace and have me sit cross legged on the floor in front of her with a book in my lap.
She would then proceed to comb through my hair with her fingers like a nit picking mama chimpanzee. She’d apply cream to the big patches first and then forage out the new smaller patches and treat those too. Occasionally, tiny new hairs would grow and her hope with them, but nothing significant or lasting. And so after a few months of this, I had read all my little Arch Book Bible Stories – but the patches remained.
The doctor suggested steroid injections next. I know my mother was hesitant to go this route but I was now missing 40% of the hair on my scalp. We went once a month to another doctor’s office and I had small amounts of steroids injected into my scalp where the bald patches were, like multiple tiny pinpricks on each bare spot.
These trips were more distressing for my mother than they were for me. It is to my parents’ credit that I have no memory of these trips being traumatic or upsetting. Between having numerous brothers and sisters and all my prior doctor visits for the thyroid diagnosis, I was used to being poked and prodded.
And my mother was always on hand, standing sentinel and calmly talking to me about benign, distracting topics. In fact, part of me began to look forward to these days as time away from school and time to have one of my parents to myself for a couple hours. They always took me out to lunch afterwards and even allowed me to order a Shirley Temple. The only condition being that I could not laud these outings over my siblings when we returned home.
Again, several months went by but this time hair did begin to truly regrow on the patches. On our last visit my mother made a comment to the doctor about the relative success of the injections. He responded accurately but rather tactlessly by saying that since Alopecia Areata is capricious and recurring, my hair probably would have come back at that time without the injections(!)
He felt compelled to point out that this also meant that my hair could all fall out again at any time in the future. While these observations were hardly conclusive or encouraging, we were pleased to be done with the treatments and the hair loss, for the time being.
My mother then gently shook her head (as if to shrug off the whole experience), picked up her purse and we headed out the door into the Texas sunshine – to lunch.
Teresa Hill Flannery is originally from Texas but currently resides in San Diego, California, with her husband, their four children, one sister-in-law, one whiny dog, and a few dead and dying houseplants. She works part-time feeding the masses at Barons Market but spends most of her time trying to keep the household running. She is also the co-leader of the San Diego Alopecia Areata Support Group.