What do Alopecia and Trichotillomania have in common?
GLOSSARY
• alopecia areata - an autoimmune disorder in which one's immune system attacks their own hair follicles in random patches across the scalp
• trichotillomania - a mental disorder characterized by a long-term urge that results in the pulling out of one's hair
I go to a dermatologist every couple months to get steroid injections into my scalp, in order to stimulate growth from hair follicle victims of my alopecia areata. I'm not sure how this works exactly, but it's been the one thing that has consistently helped to grow back my alopecia areata bald spots. I've been going since I was about eight years old.
Shots are one of the scariest things that you have to face at that age, and I was not immune to this fear. I was the kind of kid that kicked and cried when I had to get vaccinations and booster shots at the pediatrician's office. And now they were telling me that I had to get SHOTS??? in my HEAD??? The first time I went for this treatment, the dermatologist told me that if I didn't get these injections, I would risk the loss of these hair follicles forever, leaving me with permanent bald patches. So I bravely nodded my head, and I've been bravely nodding ever since.
I put up with the pain so that my hair will grow back. That's the justification, the logic for letting so many needles puncture my scalp on a routine basis. Some would say that I would do ANYTHING to keep hair on my head. And yet, the other half of my naked scalp wasn't stripped by this autoimmune disorder, but instead, by my fingers.
If you've been following along with my hair story, you know now that I suffer from both alopecia areata and trichotillomania. Quite the odd combo, huh? These disorders should be mortal enemies, right? Wouldn't it make sense that I would be especially careful to protect every hair on my head, rather than pull it out?
Well...I've always had a theory (or two) that these two hair loss disorders are more related than we may think.
my theories
1. The stress associated with hair loss causes trichotillomania and alopecia to work together in a codependent cycle.
Stress seems to be a feature of both trich and alopecia. This isn't new information.
What I'm proposing is that alopecia and trich as reactions to stress may interact with one another in a way that simultaneously enhances each other's severity.
I've always been reluctant to believe that stress is what has caused my alopecia areata. My parents found my first bald spot on my head when I was just 11 months old. What could have been stressing me out so much at that age to make my hair fall out?
However, I am of the opinion that stress worsens my alopecia areata. I think this autoimmune disorder is an inherent part of my genetic makeup, but it's definitely possible that it flares up more severely when my body is dealing with stress.
Unfortunately, hair loss itself is pretty distressing to me. Noticing a new bald spot, however tiny it may be, has always caused my mind to wander in a million directions, mainly leading to the following questions that wrack my brain: Is it expanding? Will it ever grow back? Can anyone else see this?
If you listened to my Trichotillomania Story, then you may remember that it was the stress of the hair loss caused by my alopecia areata that prompted my hair pulling in the first place.
A common feature of trichotillomania is the paranoia of wondering whether a bald spot is worse than you think it is, and a strong urge to check with fingers and mirrors to assess the severity of a potential bald spot. Then, while you're checking, you might just even out a lopsided bald spot, or cope with the stress of having a bald spot by pulling more hair out. (I know, it doesn't make sense to me either.)
So if bald spots cause anxiety and insecurity, and if the stress of losing hair does indeed enhance alopecia areata (which would create more / larger bald spots), this may then prompt hair pulling, feeding a cycle of codependent reactions to the stress of losing hair.
In other words:
This is probably the most likely explanation. But what if something else is working here too?
2. Inflammation could be the root of both disorders
Recently, I came across a study that showed evidence of "salivary inflammatory cytokines" observed in patients with trichotillomania. This suggests a relationship between inflammation and trich - a correlation, not necessarily a causation, but still exciting.
Why is this exciting? Inflammation has also been shown to be a main cause of autoimmune disorders like alopecia areata. So there's a link here! If both trich and alopecia are related to inflammation, that may explain why I have both of these disorders. Perhaps my body has a lot of inflammation, and my alopecia & trich are just symptoms of this.
All the more exciting: you can reduce inflammation in your body by adjusting your diet. So...I've just started an anti-inflammatory diet, and I'll report back soon if anything changes!
Meanwhile, I'll give you my third theory.
3. (This is definitely my most far fetched theory, but bear with me.) My immune system could be causing both.
It always made me feel so ashamed that my hair was not only being attacked by my immune system, but ALSO my own fingers. But then I got to thinking...What if these assailants share the same motivation?
Could whatever code that's telling my immune system to fight my follicles also be telling my fingers to do the same, because it reads my hair follicles as foreign cells? Are my fingers fighting WITH my immune system to get these hair follicles out of my body?
There's no research on this...I'm not even sure if it would be possible to conduct such a study. But this would account for the disturbing irony that I'm suffering from both an autoimmune disorder and mental disorder that both produce the same side effect: hair loss.
Anyway, what do you guys think? Am I out of my mind with this theory?
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So those are my theories for why I might have both trichotillomania and alopecia. The truth may lie in one, all, or none of the above.
Regardless, all this theorizing has got me thinking. Why don't we hear about more people dealing with the concurrence of these hair loss disorders? Is this really that rare? Am I alone in this?
I did some research to try to answer this question, and unfortunately I didn't find much. Deep in my Google search, I stumbled upon a case study called "Report of a Rare Case of Alopecia Areata Coexisting with Trichotillomania," published in 2016. Other than that...radio silence.
But it's my opinion that this isn't as rare as we think it is. Here's why: the shame and embarrassment that comes with trichotillomania is hard enough to deal with on its own. In my experience, adding the component of alopecia only worsens this feeling, because it feels like I'm making an already bad situation worse. In a matter of moments, I can take away all the progress that's been made by weeks of growth from the steroid shots.
It's taken me this long to share my story, and I wonder if there's anyone else out there who hasn't yet shared theirs.
All this to say, I wouldn't be surprised if the coexistence of these disorders is underreported.
It's often at this point in my post that I encourage you to share your story, in an effort to fight the stigma surrounding hair loss. But this time, I have a new plea.
If I am right, that the coexistence of alopecia and trich is underreported, then there are more people like me out there are who are suffering from a lack of information. It's disappointing to me that I have to come up with theories; I wish there was existing research.
There are currently no peer reviewed studies on the coexistence of alopecia and trich in adults. (Here is the study I have found about children.)
If knowledge is power, and there is power in numbers, then speaking up and sharing our stories can make a real impact on the understanding of a coexistence of these disorders, and this could someday lead to a treatment.
Please spread the word, and speak out. Don't do it for me, do it for science.
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If you identify with anything I've mentioned in this post, I want to encourage you to keep this conversation going. If you or anyone you know is dealing with something similar, or if you'd like to learn more about this experience, please reach out: