Almost half of the search terms linking to my blog these days are some variation of “I have a bald spot on my head.” So I’ve decided to suck up my pride in hiding all the details of this journey, and write the post I was looking for back when I was the one typing those very search terms into google almost 10 months ago.
So, without further ado, all the gory details of my hair loss journey.
To begin with, if you have a bald spot and are one of the people finding my blog by searching these terms, please go see a doctor. And don’t stop going until you get it fixed. No matter what is causing your bald spot, it’s not something to mess around with, and it’s not something that can be treated without prescriptions. I should know–I lost my health insurance for three months of this journey, after a misdiagnosis. And even though the medicine wasn’t working and my bald spots kept getting bigger and more numerous, I didn’t go to the doctor for three months while I waited for my new insurance to kick in. I am convinced that if I had gone to a dermatologist as soon as I read an article online about Alopecia Areata and knew my diagnosis was wrong, I am sure it would never have gotten as bad as it did.
Okay, without further ado, in chronological order:
During the last week of August, 2011, I was in the midst of a very stressful time in my life. I hated my job, I was producing my very first professional performance of my own choreography and all the associated stressors, I was performing in another show for which last minute three-hour rehearsals were being called every day, I lived in a really shitty house and worked in a gross warehouse, and I was just generally stressed out of my mind.
During one of those three hour rehearsals, I noticed a tiny bald patch on the top of my head, right where my bangs met the rest of my hair. I assumed it was traction alopecia, otherwise known as “ballerina baldness” from wearing my hair in buns all the time, started parting my hair to hide it, and went on with my life.
But it kept being bigger. On September 3rd, my boyfriend and I went away to celebrate our eighth anniversary, and I felt kind of gross because I had a pretty significant bald spot on my head. I kept parting my hair to cover it. He proposed to me, and I was on top of the world, but it only added to my stress. And the bald spot kept getting bigger.
On September 26, I got up to go to work, and noticed how big it had gotten (this was the day of the photograph above) and worried about it as I prepared for the day. I left for work, and then realized I had left my purse locked in my house. I had to sit outside my gross warehouse for almost three hours before my boss got my message and came to let me in. I knew that if I was worried enough to lock my purse in my house, it was time to see a doctor.
I went to see my primary care physician at the beginning of October. He told me I had ringworm, and that that was weird for someone of my age for causing baldness. Usually only children get ringworm on their scalp. I assumed I had gotten it from doing headstands in the park. He prescribed me an antifungal (griseofulvin), which I had filled and I started to take. It didn’t seem to work, but he told me it would be 4-6 weeks before I could be guaranteed for it to look better.
At this point, I had an obvious gap in my hairline no matter how I parted my hair. So I started wearing headbands every day. None of the ones I had were wide enough to hide all that, so I cut some out of some spare fabric I had lying around the house. By this point I was also crying pretty much every day about how hideous I was, and how scared I was that my hair would never come back.
The week I went to the doctor, I also changed jobs and my former employer cancelled my insurance without waiting for the month to end, which meant I wouldn’t have insurance for almost two months until December 1st.
Three weeks later or so, I realized the bald spot was still growing. I looked back at the picture from September to the picture from October and it was so obviously worse. I called my Dad and cried to him, and he didn’t believe me that it really was that much worse until I emailed him the two pictures. And then he was really worried aobut me. I called the doctor the next day to figure out what was going on. He realized he had put me on the pediatric dose of the medicine, apologized, called in a dose three times as strong, and assured me that it would start getting better soon.
During November, I was uninsured. Every day, I would stare at the mirror, willing myself to see new hair. And I kept convincing myself I was getting new hair, thanks to the exclamation point hairs that Alopecia Areata causes. They basically look like the new hair that sprouts after you shave your legs. Only they’re brittle, so every time I scratched the bald spot, I would have these little hairs break off onto my fingernails. Add that to the fact that I was afraid I was spreading ringworm around, and I tried my hardest never to scratch the top of my head. So I kept thinking that my new hair was coming in, but then my bald spot kept being bigger.
Later on in the month, I was scratching a spot behind my ear, and I realized it felt like the spiky hairs that kept on showing up on top. I couldn’t see it in the mirror at work, so as soon as I got home, I ran to the bathroom with my handheld mirror, and looked, and, sure enough, a second bald spot.
I went down and sat on the stairs, sobbing as hard as I maybe ever have because at that moment, it hit me that I really could lose all of my hair, and that if I had a second bald spot, it meant that the ringworm was spreading and I was disgusting and that my life sucked. My fiance walked in the house and was instantly worried about me, and I told him I had a second bald spot, and he held me, and then we realized we needed to check to make sure that they were the only two. They weren’t.There were six.
I called the doctor the next day, again to figure out what was going on. He said that he was sure the new spots had actually come about while I was on the pediatric dose, that he really did think I had ringworm, and that if it didn’t get better relatively soon, I should see a dermatologist.
At this point, I kind of thought he was crazy. But I went ahead and took the pills every day, hoping it would get better, and despairing that it never did. I scheduled an appointment with a dermatologist for right after I got insurance. I scoured the internet for information, and one day, while reading about ringworm causing baldness, I happened on an article that said “Not to be confused with Alopecia Areata.” I started googling, and I was completely sure I had Alopecia Areata. Everything I read sounded like what I was going through: sudden hair loss in defined patches, exclamation point hairs around the edges where the patches were growing, multiple patches, no itchiness or redness or tenderness or really any sensation out of the ordinary of any kind, a family history of autoimmune diseases (no one that I know of has had alopecia, but they have had arthritis and crohn’s disease). I knew I had alopecia with a clarity I have rarely known in my life.
As December began, I started noticing that the spot on top was no longer completely smooth bald. It had these soft, fuzzy white hairs growing in that were completely invisible unless the light hit them at just the right angle. I was nervous about going to the dermatologist. I knew she was going to diagnose me with Alopecia Areata, and I knew that in some ways, I would feel better about it than I did with ringworm. It would make me feel less disgusting because Alopecia is something that just kind of happens and is nobody’s fault, whereas being an adult with six bald spots from ringworm made me feel like the least hygenic person in the world. But on the other hand, alopecia can come back at any time in your life, and you never know what is going to happen, if it will all come back and fall out again, if it will all fall out and never come back again, or anywhere in between.
So I went to see her, and she did, in fact, tell me I had alopecia. I sobbed. She said I could use topical steroids and see if they would help, I could take oral prednisone to make my hair come back, or she could give me some steroid injections to make it come back. My grandma was once on oral prednisone for her lungs and always talked about how horrible that was, so that was definitely out. With all my crying, she decided we should to the topical steroids and the injections. She gave me about fifteen injections in the big patch on top and a few more in the patch on the middle back before she ran out of how much she could give me in one day. She set another appointment for a month, and as she was walking out of the room said, “It will grow back. It grows back 99% of the time, and you’re not that special.”
I stopped taking as many pictures because I just couldn’t stand it anymore.
A few weeks later, as I was leaving to go home for Christmas, I realized there was another tiny bald spot growing in what was left of my bangs. I cried through the entire trip home. But, a week before my next appointment, and right before I left my parent’s house, suddenly, mercifully, my hair started to come back. A dark ring appeared around the big patch on top. It turned that sort of green color that happens when pale people with dark hair shave, when you can see dark hair through the skin. I cried and I cried and I cried. Could this really be the end?
It started to come in, but I also got a whole bunch more spots. By the time I went to my appointment at the beginning of the month, I had the six big spots and a bunch of little tiny ones bringing the total to 22. The doctor told me I had to take the prednisone since she couldn’t give me enough shots to deal with all my patches. Yikes. I took it. I got sick and I hated it. But I was only on it for two weeks, and I got through it. And then, all my hair started to grow back! I was overjoyed. The spot on top was still just a weird ring of new hair instead of a full patch like I expected.
I was surprised with how it started growing in. It would be that thin white hair for a little while and then the color came back. I had sort of expected that it would come back with kind of blunt ends. But they weren’t, and it was really soft and fuzzy. For each patch there were three or four days where all I wanted to do was rub it because it was so soft.
Things kept getting better in February-May. My new hairs were growing in, but that weird middle part of the top kept not coming back. For a while, I had so few long bangs that I looked ridiculous with my headband, so I cut myself some combover bangs and kept them under the headband for a while. Then my tiny bangs started growing back, and eventually they got long enough that I had tiny bangs, and I sort of felt like I looked like a hipster Audrey Hepburn. But eventually it started to really bother me that that one weird little spot on top just wouldn’t go in. And after five straight months of steroid injections, I came to believe they weren’t going to help. But all the other spots were coming back, and I had twenty-two weird tufts of hair that stuck out in weird directions sometimes. But at this point, other than the length and that top spot and the middle back which also hasn’t come back all the way, the rest of my spots looked exactly like the rest of the hair. If it wasn’t for the difference in length, I wouldn’t have been able to find them anymore.
Which brings us to now. The picture shows about what it’s looked like for the last several months, where my recovery seemed stalled. It looks gray like that because of all the weird white hairs growing in the bald area. When I went to the doctor in May, she stopped giving me the steroid shots and started me on anthralin. It’s itchy and turns my skin brown, which is actually an excellent side effect because it makes it practically impossible to see my bald spot through my crooked bangs. It’s itchy in a way I can only compare to a serious sunburn–it hurts more to itch it than it does to leave it alone and feel like scratching it might help. I’m wearing it almost 24/7. I also bought some hair dye and dyed the white hairs, and the whole thing looks much hairier now, so I’m really glad I did it.
I’ve been on the anthralin for almost three months now, and I definitely do feel like I’m starting to see a difference. But it’s kind of messy and gross. It makes my skin flake off in these huge brown chunks almost every other day. It makes my shower dirty because it stains all the skin cells, so I have to wash my shower way more often. I had to get a shower curtain liner because it was starting to stain my shower curtain.
Anyway, that’s pretty much all I have, but I’m willing to answer any questions. If you’re googling looking for information on your baldness, please let me know if there is something you want to know about the experience of all of this that I haven’t covered. I want to help.
And, seriously, GO SEE A DERMATOLOGIST. The earliest appointment you can get.
UPDATE SEPTEMBER 2016: Hi everyone. It’s been four years since I made this post. At present I have no bald spots. Since I wrote this post, each winter except one I have gotten one bald spot that got to around an inch in diameter, in a different place each time. When one pops up, I start to use the anthralin on it, and it fills in by spring. I have made my peace with alopecia, it is no longer anywhere near as painful or traumatic as it was to me that first year, and it has never gotten as bad again. Time really has helped.
I no longer maintain this blog, and every once in a blue moon I will sign in and see all the comments waiting to be approved, and then I feel bad because I know how desperate you can be for answers. Please don’t ask me to answer questions–it is very likely to be months before I see any responses. Instead, go to Alopecia World, which is a forum for people with alopecia. You will be able to get answers to your questions much faster, and you will find a community of people who are going through the same thing.