Something often discarded in conversations around chronic illness, treatment, side effects and life in general when you’re sick are the myriad of ways our bodies change as time goes on.
For my entire life my hair has been a central part to who I am. It’s something that has made me feel beautiful. It’s something people associate with me. It’s something I’ve invested heavily in when I’ve made expensive mistakes like dying it black or cutting it too short.
And as I’ve been sick, the opportunity to take the short burst of energy I have to simply paint some eyeliner on my face and curl my hair allows me to feel like myself again. Even if I have to nap the rest of the day because doing so exhausted me, at the very least when I’d get up to pee I’d catch a glimpse of the girl I used to know in the mirror.
The truth is, in being sick things like doing your hair and makeup everyday just don’t really exist. Which forces you to get used to yourself in a more plain state of being.
When I began my journey in trying to treat my arthritis, my Rheumatologist put me on a medication that could very likely cause hair loss. No one told me about this, nor did anyone ask if this was a side effect I was willing to risk.
In the late Fall of 2020, I began to lose a substantial amount of hair. Sometimes it would come out in large clumps in the shower.
My meds weren’t making me any better, in fact I was getting substantially sicker as the months went on, so not only was my physical health deteriorating rapidly, but my mental health was plummeting as more and more hair began to fall out.
In February of 2021, we finally stopped the medication. I’d begun a supplement – folic acid – for both nausea and for the added benefits of hair growth.
By this time, half of my hair had fallen out. From a visual perspective, much of the hair at the front of my head was extremely thin, and the right side from my forehead to just above the back of my ear had thinned out to almost nothing.
I refused to take any more meds that would possibly result in hair loss. It was too much of an extreme for me, and there are less invasive treatments available (like Low Dose Naltrexone). These less invasive options should have been the starting point for someone with such little disease activity, not something I turned to out of desperation and my own research.
This began the start of a very long road to recovery and regrowth. I did not take many pictures of myself for much of that year. I didn’t like who I saw in the mirror.
It didn’t matter that my hair had stopped falling out completely. I wasn’t even losing the expected dozen or so strands a day that’s considered normal. I went over a year without losing more than 1-2 strands of hair a week.
But the person in the mirror wasn’t me anymore. And regrowth often makes things a lot worse before they start to get better.
By early Summer of 2021, my hair was coming back in.
I had some nerve testing done and got to talking with the Neurologist performing the test about some of my previous health records. I mentioned the hair regrowth which was now about an inch long, resembling mini bangs. She almost sighed in relief as she joked back with me that she thought my hairstyle was intentional.
I knew it looked bad. She knew it looked bad.
By August, the plumes were growing longer and began the next step of horror: standing up straight.
My hair was no longer able to be styled.
I was working so hard on feeling comfortable in my body. A body that had yet again broken down in other ways as I was battling Lyme disease that summer while also managing new changes from all the steroids and antibiotics and diet changes that caused weight fluctuations. And the one thing I had always counted on, was a fucking wreck atop my head.
Of course, no one else understood even though they could directly see the unruly hair. They didn’t understand why my hair growing back wasn’t enough for me to happy.
This forced me deeper into emotional turmoil trying to understand what I was doing wrong. Why did I hate myself so much? Why couldn’t I find any joy in this?
The reality is, this was the worse before the better. Every time I saw my hair, I saw the damage that had been done to me. The slew of medical neglect. I remembered the sharp pains of emotions from when the hair was falling out. Growing back was good, but it was just a visual reminder of so many awful things and no one held space for me to be upset.
In early fall, I needed to go to a salon to start correcting the new hair growth.
I had a new problem that was mildly upsetting, the new hair growth was not only very short, it was growing in an entirely different, much darker color:
I was so thankful to find a stylist who was able to work with me and she spent an entire afternoon correcting my hair. We did everything from highlights to color correction that blended the new dirty blonde color to original blonde, while also getting a hair cut and adding in layers that would eventually blend with the new hair.
At this appointment, I learned that the hair regrowth was throughout all of my hair, despite at this stage only really being visible right up front.
This ordeal cost hundreds of dollars, but it was the first step towards feeling like myself again and taking back how I felt:
I was tired of hating the person in the mirror.
I set out to try and find ways to work with my hair instead of letting it control me.
That year for Halloween, it was the first time since I was a child that I had hair that was long enough to look like bangs, and so I did what any horror fan would do and dressed up as a character from Scream:
I was finally starting to have fun. The costume turned out even better than I imagined.
By the beginning of 2022, I was an entire year into my hair regrowth journey. I still spent a large amount of time pretty frustrated with my hair.
Anyone who has had bangs and decided to grow them out has been through this – even I have been through this as I had bangs in middle school.
The hair was slowly getting longer, but not quite long enough to pull back. Not quite long enough to tuck behind my ears. So I was constantly annoyed by it.
Except for the day where I realized I looked just like Cindy Lou Who:
An uncanny resemblance if I don’t say so myself.
For almost an entire year I hadn’t taken pictures. I hadn’t bothered to get dressed up or feel put together, and in the photos I did take I tried to hide the hair regrowth from view, or crop the photos midforehead so you couldn’t see it.
And finally there I was absolutely cackling in the mirror because I had completed my transformation to be one of the who’s from Whoville.
My hair continued to get longer and that began a new chapter in trying to see how I could work with my hair.
One of my biggest issues was that on the right side of my head, it was almost ALL new hair that was very short, unlike on the left so I couldn’t mask it much. I had tried doing mini braids right at the front to hide it a bit, but the braid on the right would end up much bigger trying to pull in enough hair to actually make the braid long, and totally lost the cutesy early 2000s look I was trying to recreate.
Instead, I decided to experiment with hair extensions I’d had laying around from high school.
I’ve always wanted pink hair, and despite not having to worry about various job dress codes I do still have to worry about judgy doctors.
And so I dyed my extensions which happened to be the same length as all that hair that didn’t fall out. Not only was this super fun, but it gave me a way to express myself and manage my hair all at once.
I felt like me again.
I could clip the extensions directly into the new growth and suddenly have more evenly long hair. It helped to hide it. I could also make my little mini braids more successfully with the clipped in hair. And the best part was, if the weight of the added hair or the strain from the clips began bothering my migraine I could simply unclip them.
As the hair continued to grow, I found one more perfect solution, double French braids:
After over a year I’d finally done it. I found a cute hair style that didn’t cause too much strain on my hair, that hid the vast majority of my new hair growth while keeping it out of my face.
The person in the mirror was me again.
I felt more comfortable taking pictures of myself. I didn’t feel the need to hide my hair or feel so bad about it.
As Summer approached, my hair finally reached “bob” length. I could tuck it behind my ears. It could be styled with my hair regularly.
A year and half into this regrowth journey, and there are new things that come up, but I’ve finally reached the point everyone wanted me to be at last year, I see the regrowth as something positive. Now of course, it looks like the long part of my hair are extensions:
As the hair keeps growing, I can finally see what my hair stylist saw last year: it is in fact all over my head.
Even more interesting that it growing in as a different color, is that it is growing in as a different hair type altogether. It is curly.
I do not know why it is curly. My hair has always been just a few steps away from stick straight, with a slight wave to it, but all of the new growth curls.
I’ve always wanted curly hair so I hope it stays.
Now I have other little wins to celebrate too. I can pull it all back into a ponytail now. And compared to the ponytail I had long before the hair loss started, my hair has grown in much thicker than before. I’ve always had relatively thin hair, I never knew thick and healthy hair was possible for me.
I still get annoyed as I try and move the swoops of hair around my face out of my face. I get annoyed as my hair dries after my shower and it curls so tightly that it’s a bit too short to reach behind my ear.
But today, I take myself as I am.
It took a year and a half for my hair to grow from a long bob cut to the length it is now, and so my new hair growth is now that length. I am halfway there.
Emotionally, I don’t need another year and a half to be in a good place about the person I see looking back at me.
I may choose to continue to be extra careful with my new hair by limiting heat products, and that may mean my hair looks a little inconsistent with itself, but today I don’t mind.
I don’t actually notice it too much anymore.
It isn’t glaringly obvious unless you’re looking for it. In person sure you can see that the right side of my head is mostly shorter hair in the front, but that’s okay.
Maybe it’s vain to care so much about something like hair.
Maybe because it’s viewed as vain, and because chronically ill and disabled folks don’t really matter when it comes to vanity, that’s why it’s so underdiscussed and why so many of us struggle to find others who even remotely understand what we’re going through.
But surely, hair loss is pretty damn common. Between folks who require use of biologics or other meds that can cause hair loss, and a new slew of folks who are discovering covid related hair loss, and other conditions that may cause it, there’s probably quite a number of us dealing with the emotional toll of losing our hair.
And we deserve to have space held for those feelings.
We deserve to feel supported on our regrowth journeys and to know that it can growth back. It just takes time.
You will get there.
I’m getting there.