On Getting Severe Alopecia at 24 Years Old And Reconstructing My Identity
The hidden and obvious consequences of having to reconstruct my identity at an age where most people are learning to accept themselves.
Alopecia Sucks
Why am I writing this today? Well, I didn’t want to write this one for a while, and I was honestly hoping to have some resolution to speak of, but instead, I’m bald, lying in bed sick for a 3rd time in 4 weeks, using this as a chance to let my brain recharge.
How I Got Alopecia
I think there are myriad reasons.
One could be antibiotic use as a kid—I had sinus infections all the time and so me and penicillin became well acquainted.
Another is stress. I had/have pretty severe OCD. As a kid I cannot emphasize just how disruptive it was.
Every time someone coughed, touched me, or even breathed audibly in my vicinity, it felt like I’d been cut off while driving and had an airhorn blown in my ear in unison.
That was how school was for me from age 10-22, and that’s really not hyperbole. School was terrible.
The last reason for my alopecia could be expectation.
I grew up in one of the many Diet Palo Altos: Pleasanton. Similarly competitive schools, but PA had us beat on school suicides, which is a weird thing that happens when Ivy League is the expectation. I felt like I’d actually ruined my life junior year with just a 3.8.
I don’t still have a chip on my shoulder. Nope.
I also had a huge growth spurt, and I saw all the guys who got girls getting into bodybuilding, an insecurity machine, so of course I had to compete there too.
So sinus infections, terrible OCD, insane academic expectations, and body dysmorphia.
The First Bout
The first experience was at like 15.
It started with plaque psoriasis on my scalp (which I believe I had for a long time before). You can see a small spot on the top of my head in this photo from Junior Year.
As life got more challenging, I’d pick at the plaque, and the hair around the plaque would fall out. Yeah, you read that right. The spots where there was plaque, there was hair. The plaque was a concentric circle inside a ring of missing hair. It felt temporarily very good to pick at the plaque, even though sometimes it stung or bled. I worried constantly about damaging or scarring my scalp, but I couldn’t stop.
Eventually I went to the doctor, and they gave me corticosteroid injections, which cleared me up.
As I went through ebbs and flows of bad OCD and taking on too much (the second one becoming more and more common), I’d have a flair up, I’d get the injections, and things would normalize.
From Bad to Worse
School basically sucked the whole time. Alcohol in college calmed my nerves a bit, but it lowered my IQ substantially, so I had to choose either smart and homicidal, or dumb and tranquil. I often chose the second, maybe unconsciously, and maybe because I ended up in the testosterone fraternity.
In either case, I partied my way through an engineering management degree with a 3.5 before quitting drinking around my senior year. During my masters, I had maybe 12 drinks throughout the entire time, and with that, the OCD came roaring back along with the psoriasis/alopecia combo.
Instead of injections, this time I shaved my head and wore hats to prevent myself from picking at it. I found that stressing about my hair and picking at it made it worse, so having no hair meant I couldn’t worry about it. It eventually got better.
After my masters, I moved in with my grandpa and struggled for something like 6 months to find a real job.
During this time, I had an “internship” that paid me ~minimum wage and required 4 hours of commuting every day, which only disheartened me further. I had friends making six-figures who didn’t have a masters, and I was making minimum wage.
If comparison is the thief of joy, I was joyless. Look at that hair though. Wow.
I eventually got a data science/engineering job, but it was in a random suburb 30 minutes outside of Sacramento. I knew nobody in Sacramento (or this random suburb), but I chose it over another offer because this job advertised being remote-friendly and the pay was C.o.L. adjusted better.
I didn’t realize money and remote works are terrible reasons to choose to be miserable (remote work was ultimately terrible for my mental game), but that’s how you become old and wise—you have to be young and dumb first.
So I moved, I was terribly alone and under-stimulated, and naturally I started picking at my scalp again.
In college there are friends, girls, events. You feel important. As a senior you’re top brass.
While living in this random suburb as a 23 year old man, as anybody who has ever been a 23 y/o man will tell you, nobody likes you. Blink 182 was right after all.
You’re poor and immature compared to 28+ year olds, and you have no idea how to rectify this.
After a year at this job in this random Sacramento suburb, I went remote and moved down to Palo Alto to start working on startups with my brother.
I was still working full time, but now I was doing it in total isolation while all my roommates were at work. After work, due to compulsion, insecurity, and intense loneliness, I’d spend from 5pm-11pm in my brother’s room every single day (weekends we’d work even more) building our startup.
I didn’t see family. I renounced my friends (my college best friend was our roommate and I hung out with him maybe 3 times this whole year), and the only thing I did for fun was mountain biking (those have since been stolen), but I have a mountain biking/dirtbiking youtube channel, so even that was more work than it was play.
This is when the Alopecia got really bad.
Becoming a Product Manager While Becoming a Founder
What would compel a person to pursue 2 of the hardest things to become in the Silicon Valley at the same time, I don’t know. Actually, yeah I do: THAT BIG OL’ CHIP ON MY SHOULDER, and boredom.
This remote job was killing me slowly, and after talking to my brother a bit, he thought I should try to orient myself toward becoming a PM.
I interviewed at some data engineering jobs, but always bombed the final interviews because I had no mentors at my current job to teach me how to actually write code and my brain was fried 100% of the time from working too much and OCD (it was getting better, but still very much not great).
Eventually a job description surfaced for a Product Manager with a data science background. I of course applied, and spent hours every day learning the ins and outs of Product Management.
Obviously you can only learn so much with books, but taking my accrual of startup acumen and the books I was reading, I somehow convinced them to hire me.
This feels like a happy ending, but it was a…um…sad ending.
I was still working literally all the time.
The weeks leading up to the offer, I had started to lose significant patches of hair from the back of my head. I had a sort of mini-afro at the time, so it wasn’t yet noticeable, but by the time my first day of work came around, those patches had grown to about the size of a softball.
Life With Alopecia
At first I assumed this would be just like the last times: get the steroid injections, wait a month, voila—hair. That never happened.
I kept my hair short but not fully buzzed, and instead of it growing in, it just kept getting worse. I’d get steroid shots, some areas would start to grow in, and other areas would expand at a commensurate rate.
Eventually I just wore hats all day every day. I even got yelp famous for a review I did of The Patio very early on in my Alopecia journey.
I tried to let my hair grow out, but it ended up looking like a strange combover.
My brother kept telling me to shave it, but like so many things, that would mean admitting defeat, admitting that I’d have to change core things about myself, and no 24 year old wants to admit that!
I couldn’t be the boyishly charming, snarky tall athletic guy. I’d have to become somebody who had merit beyond the things. I’d have to become the boyishly charming, snarky, tall athletic bald guy, and those two things felt very different.
On a serious note, I’d spent the last 10 years clumsily figuring out worked for me. I didn’t feel like I could be boysihly charming, or snarky. My look and my personality were symbiotic, and one had just disappeared, so the other had to follow.
But I couldn’t accept it, because I wasn’t convinced I needed to yet.
In late 2019 and early 2020, I’d started to ignore it and get my life in order, and as if by magic, it came roaring back.
This was in early 2020 after it grew back ^.
That music stopped pretty quickly, however, probably from a squaric acid treatment we tried + a helping of renewed hopelessness after Covid lockdowns were extended a year.
Over the next 2 years, I tried more frequent injections, typical men’s hair loss treatments, and a host of immunosuppressents before deciding that I had to take the hat off.
I went from a guy with thick curly brown hair to a bald guy in no time flat, and 4 years later I still hadn’t accepted it.
How I Accepted It
There are two things that really suck when you make a big change in life:
Abandoning the comfort of your routine and self-assessments
Social pressure to stay the same, or at least to address the change
The first one really boils down to inertia. Your identity lags reality by years.
If you lose a bunch of weight, it’ll take you at least a year to feel like a skinny person.
In my case, I went from looking like a young man to (what I thought was) a diseased older one.
The social pressure is tricky because on one hand no one really cares, but on the other hands, you perceive that everyone cares, so it’s impossible to not have your world rocked basically daily for the first month.
There was also shame associated with having hid my lack of hair, and then there’s the “whoa, I didn’t know you were bald” comments that make the shame all the more poignant.
Some people who I knew well didn’t like that I was trying to be more mature, more serious, more stoic, but to me, I had to be to really fit with my new look.
I somehow ended up with a girlfriend at this time, and it took me 2 months of knowing her before SHE even saw me without a hat on.
I didn’t know what to do.
Taking The Hat Off
I know it seems like a minor detail, but me taking the hat off was the single hardest thing I’ve done in my adult life.
The impetus came from a few things. Weddings on the horizon. Going out with friends and not being able to wear hats inside of certain bars. Shame.
One night it came to a head. While out with some friends, we were in line for a bar that didn’t allow hats. When we got to the front, the bouncer said I had to take my hat off, and instead of taking it off, I went home. I was so disappointed with myself.
What kind of coward can’t embrace himself? That’s step one.
I was literally wearing my insecurities on my head and by going home that day, I was admitting that it controlled me. I was done being controlled.
The following Monday, angry, I didn’t wear a hat to the office. I hated hats. They stood for shame, for weakness, for externalizing control over my life, and that wasn’t me.
Many people thought I was just male-pattern bald and insecure about it. Many people made comments, that albeit mostly neutral or even positive, still bounce around in my head from time to time. But all that said, for the most part it didn’t matter to anyone after the first day.
It took me over a year of not wearing a hat to forget I wore one, but it only took a few weeks for me to be happy with the decision.
No more hiding, no more having any of my self-esteem reliant on a thing that is ultimately out of my control. No more weaknesses.
Where I’m At Today
I still don’t wear a hat. In fact, I feel weird in one.
Hats represent so much shame to me that I make it a point to meet people without one, and only wear one when I absolutely need to.
I take immunosupressents that haven’t done shit work for my alopecia, including an experimental one called CPT-543 (Deuruxolitinib, not sure what brand name will be), Xeljanz (tofacitnib), Olumiant (barticitnib), and I’m about to start the last one on the market, Litfulo (Ritlecitnib).
They’re damn good at making me get sick all the time, which ironically has helped my OCD because I used to be terrified of germs, and now I realize that being sick all the time isn’t as bad as being ugly. That’s a joke that I lack the maturity to omit. Please don’t cough on me, I am fragile.
I also take oral minoxidil, which mostly just messes with my sleep, and I occasionally dermaroll.
My hair is still shaved. The sides never had much hair loss, so it really does just look like I’m interestingly bald, but the top has started to show signs of life after the acid basically slash and burned my scalp 3 years ago.
Alopecia is one of those things that, while I can’t give any scientific credence to this theory, I believe is a mental battle more than anything else.
Yes, you can get treatment and it can work, but I believe Alopecia is a symptom, not a cause.
Alopecia is a manifestation of something wrong in your life.
Maybe it’s too much reliance on what you look like. Maybe it’s financial/status insecurity. Maybe it’s stress and trying to be too controlling.
To me, Alopecia forced me to work on all these, because both before and while I was on treatment, I always felt that the months I felt the most ugly, insecure, stressed were the months I lost the most hair.
I didn’t really want to write this because I don’t really care anymore. I do great with girls (I’m single because I’m picky, ok?). People mostly like me a lot. I’m very confident now that I have literally no insecurities.
I put my life on hold for 4 years, and now I’m realizing by doing that, all I did was lose 4 years.
It really is what’s on the inside that counts, but I will be the first to concede that what’s on the outside affects what’s on the inside a ton.
Sure, sometimes I wish I could rely on my looks to get the pretty girl, or charm people without having to act like an adult, but for the most part, I feel like it forced me to grow up and start focusing on the right things in my life, or at least stop focusing on the wrong things.