A Woman Balding In Her 20's: Alopecia
Hey 👋🏻 I’m Lainie and I have alopecia aerata. While I’m not ‘sick’, I am living with an autoimmune disease that has no expiration date. It’s not contagious, it’s not caused by stress, and there is no cure. I found the first spot on my head three years ago, and since that date, I have lost all of the hair on my head, cyclically, at least twice. I sport a hairstyle that looks more like continents on a globe than a haircut but I have the pleasure of concealing it on a daily basis with a more luxurious version of my former hair.
Although I have experienced other autoimmune issues (try living with constant canker sores in your mouth for almost a year..) both at the time of onset and continually during flare-ups, I am not sick. It might look that way to everyone on the street looking at a bald 28-year-old, but I can assure you that I am healthy.
My first exposure to Alopecia was through the most educational, impactful TV show of my teen years… The OC. Julie Cooper is telling Jimmy that they need to buy their daughter a new horse because: “China has alopecia... It's just not right for a little girl to love a hairless pony.” Never would I ever have thought that China and I would have something in common, nor would I have imagined that I’d learn about an autoimmune disease through the OC, but here we are.
So what is Alopecia? Here are the quick facts:
It is an autoimmune, inflammatory disease that affects your hair follicles. Your immune system can attack these hair follicles on your head, your beard, or anywhere else on your body.
It isn’t caused by stress.
It affects up to 2% of the population at some point in their life and 0.15% of the population at a given time. Only 11% of those people experience the loss of more than 40% of their hair- I roll with this crew.
There are a few different kinds, but the most common is aerata which is considered ‘patchy’ alopecia.
It’s often accompanied by other autoimmune conditions.
Some people with alopecia get phantom ‘tingling’ on their scalp when they are going to lose hair. I can assure you this is real- I’m basically a weather forecaster for my own hair loss.
Treatments can include oral prednisone, steroid injections in the scalp, contact dermatitis via DPCP, and the easiest of them all- Rogaine.
There isn’t a cure!
Although it is not life-threatening, alopecia often causes extreme distress, anxiety, and depression for those living with the condition. It has really opened my eyes to the importance society puts on your head of hair and how much of your identity this can represent (add the redhead factor here). That being said, my diagnosis and continued existence with this condition have brought great perspective into my life. I’ve learned to control only what I can control. Pouring time and energy into worrying about what’s next, feeling sorry for myself, and wishing that this never impacted my life will get me nowhere but further away from happiness.
I catch myself far too often saying “it is what it is” and although I’m frustrated with my repetitiveness, I am happy to have that attitude. I am cautiously optimistic when I experience regrowth on my head but am always aware that this could be short-lived. Have I tried the recommended treatments? Yes*. Do I sit and spend my day thinking about this? No, it is what it is. I’ve got far bigger things - my relationships, my job, my life - to pour my energy into and don’t want to waste my time worrying about something that there is quite literally no cure for.
*side note: will I keep trying? Definitely not. Between being poked by countless needles and my scalp pretty much burning off, I can have confidence I’ve done everything I can do and don’t need that pain-for-no-promise-of-a-cure in my life.
At the end of the recording, Jeremie asked a question that I knew was coming, but still couldn’t find a good answer for; what has having alopecia taken away from me? Other than the obvious, I’m not sure what may have been ‘taken away’ however, there are a few unexpected ways that alopecia has impacted my life that I could have never before imagined. Here’s a little taste of things/experience that I never thought I’d have to think and/or worry about:
- Riding a bike (or really any activity that involved a helmet). It now needs to involve either a larger sized helmet or somewhere to store my hair.
- Going on a company trip to Antigua and not scaring half of my colleagues that still haven’t figured out I have no hair.
- Swimming. I can no longer pretend I’m Ariel in a pool and have to reapply sunscreen to my bald scalp 100’s of times a day by the water (insert redhead factor once again).
- Hair elastics are no longer too much of a worry because a topknot really isn’t a thing in my life anymore.
- Having a Border Guard pull my wig out of my travel box in front of the entire Toronto airport, or making me take my hat and hair off no matter how many times I tell them it’s medical (this ends up embarrassing them far more than me).
- Sunglasses and glasses need to be carefully selected and have arms that will expand over a wig and frames that will fit over a wig yet under a hat. It’s trickier than you think.
- Realizing that I may wake up one day with one or no eyebrows, no leg hair (please?), no eyelashes, or complete hair growth.
I want to thank Taylor, Brian, and Jeremie for providing not just me but all of their guests such a fantastic platform to speak freely about the things we often shy away from. Being open about my experience with alopecia has already brought me closer to so many people in my life that I wouldn’t have imagined, and I hope that the continued conversation will allow them, and others, to be comfortable in this patchy haired life ❤.