Posts Tagged ‘autoimmune’

When I said things have been wild and complicated, a lot of what I was referring to is my most recent Alopecia flare. I didn’t want to make this blog my Alopecia blog, so I have been waiting to post about it. These changes have been the last year or so, and the story is not over, but I couldn’t wait any longer to write about it.

When I was waiting for the situation to accumulate, I never imagined it would be like this. I never thought it would be this severe and take over my life.

History

I had my first Alopecia Areata flare when I was 17 years old. It was one of the most stressful times in my life. Two spots appeared, one at my temple and the other climbing up from my neck. Neither were very large. At their biggest, perhaps a quarter. I remember my sister snarkily pointing the first out. I didn’t believe her until I ran my fingers along the deviation in my hairline in front of the mirror.

I went to a dermatologist and got steroid shots in the spots. To my pre-childbirth, pre-tattoo skin, it was excruciating. Particularly the one at my temple. But the hair came back with only one treatment, and it was behind me.

For a couple decades.

My Alopecia returned with the pandemic and lockdown. Small spots appeared, maybe 4-6 of them. As far as I could tell, they were behind my ears and in my undercut. They may have been more widespread, but my hair was so thick and I couldn’t go to the salon so I would have never noticed unless I was hunting for them.

After lockdown lifted, mad with freedom, I scheduled an undercut tattoo. Premeditated impulse.

The tattoo unexpectedly was as effective as the steroid shots. My dermatologist theorized that the trauma/healing of a tattoo distracted the immune system from my hair the same way other treatments would. As my skin healed, it once again seemed to be behind me. I guess, in my mind, I always assumed it was something that I would get over and be done with. I never really knew about how Alopecia flared, how it was forever.

It came back again. It was not decades this time. Months maybe. It started slow, a small spot behind each ear, one at the back of the head. When they steadily spread, I reached out to a dermatologist again.

This Flare

This flare has been different than any of my previous ones. It has not responded to treatment. And it just keeps spreading and getting worse. The hair poured out of my head. I held chunks in my hands. Nothing I ever imagined dealing with.

The spots crawled across my scalp. I ignored them, downplayed them, listened to people as they said I shaved half my head anyway. It sounded nice. With my thick, long hair, I told myself it would pass again.

The steroid shots brought back tiny patches of hair. They were like tiny islands in the smooth ocean of flesh. And the sea kept rising.

Loss

The loss accelerated. It exploded. Literally. An explosion of hair cascading from my scalp. It was wound in my fingers. It was stuck to my shower wall and sinks. It was clogging my drains. It was filling my trash cans. It was tangled in the carpet and choking the vaccuum. I had no idea I could lose so much hair and have any left attached to my head.

It was every time I touched my hair, the worst when I washed or brushed it. And every strand was traumatizing. Every strand felt like it was being plucked out of my heart. Pieces of myself falling away. It was the evidence of me losing to my body with every breath and movement.

The bald spots climbed over the bottom and back of my head, meeting nearly in a band. Once I lost that ground, I extended my undercut above my ears. It felt like a retreat; it felt like a surrender. But it let me keep my hair, gave me a hope at hiding the loss. I told myself I was meeting my body and my Alopecia where they were. I was compromising. Yet it still felt like giving up.

Then it was no longer spots. My bangs began to thin, so I had my stylist move them back to thicken them. Then continued to rain down. After shaving two thirds of my head, I continued to lose handfuls. Every day, it was breaking me down. I could not focus on anything else. It was only the loss, only the failure.

To escape that daily trauma, I gave up. I reasoned that even if the hair grew back, I would have to start over anyway. It would never return smoothly. I imagined a fluffy fuzz branching out through the surviving long strands, the patches of regrowth sticking up on my head. No matter what I did or what happened, I would have to start from nothing.

So I truly surrendered, and I shaved my head.

I have been going to the same stylist for YEARS. We met when she saved me from a botched bob. She first suggested my undercut. We tried an array of cuts and colors. I let her do what she wanted to do with my hair, and her art shown. At the time I started really losing my hair, it was damn near perfect. It was what we had been growing and working toward for years. It was smooth and healthy. It was the exact style I wanted. It was great for dancing. I remember thinking how much I loved my hair.

Right before it started to go.

Even though I could have easily shaved it off myself at home, I went to her. She had tried so hard to save my hair along the way, so it seemed right to end it together. We cried; we laughed. I cried A LOT. The entire experience was surreal, like there was no way I could be in that moment, losing all my hair. It felt like it was happening to someone else.

Then I was bald. As upset as I was by it, it was done, and I turned to adapt to it.

I thought this was it, time to deal. Only it hasn’t been it. Somehow, I have continued to lose.

I noticed a stripe in my eyebrow, so thin my husband assured me it wasn’t loss. I noticed that hairs I had plucked out on the right side never returned. Then the right brow continued to thin before its sibling followed.

The eyebrows were more upsetting to me. I hated how I looked. I could scarcely look in the mirror. I took to makeup to fill the blank flesh, but I became paranoid about it. I wouldn’t go anywhere without eyebrows.

None of my hair grew back. I buzzed my head and shaved parts of my body in October. None of it grew. I continued to lose of my head, leaving only a stubbly patch at the top. Yet no more shaving my armpits or legs. No plucking what was left of my eyebrows.

And most recently, the eyelashes. Like the eyebrows, it started as one questionable spot before making itself undeniable. Now I am the same way about my fake eyelashes as I was with the eyebrows. Sticking them on, constantly adjusting, glue in my purse for touch ups. Anything to not advertise my loss.

Treatment

Once hair loss is clearly Alopecia, you’re referred to a dermatologist. I showed this flare to my primary care, and she immediately referred me out. My case was clear.

My dermatologist is the only one in his practice who handles hair loss. He is not my favorite. He started off very flippant about the whole thing. It did not seem like he was minimizing, but it did feel like he was not on the same page as me as to the severity or how fast it was progressing.

Until I showed up looking like a naked mole rat after just a few weeks. I went from having 1/2 of my hair still intact, long and well past my shoulders, bangs to not even eyebrows.

We have tried all the basic treatments. Steroid creams. Some other creams. Steroid injections. I extended my scalp tattoo.

Nothing had any effect. It just kept getting worse. And so fast.

After the last appointment (when we got on the same page about how bad it is), the current plan is to try the new JAK inhibitor that came out last year, Oluminant. It is supposed to selectively suppress your immune system to prevent it from attacking the hair. The clinical trials had good results, and people I’ve seen in online support groups seem to be enjoying success.

I didn’t want to do pills. I didn’t want to do immunosuppressants. The potential side effects are terrifying. Like, is my hair worth risking a stroke? Oluminant has only been on the market for less than a year. Thought it did well in trials, that speaks nothing of the real population. It’s like buying the alpha version of tech. All the bugs. So when it was just the hair on my head, I wasn’t going to do any of them.

Losing my eyebrows and eyelashes changed what I was willing to gamble. So here’s to trying pills. I just have to clear the bloodwork and insurance first.

Because somehow as my body kills its own hair, this is all cosmetic.

I also got my first round of eyebrow tattoos. I had looked into microblading and was told my tattoo artist did that. But when I went in, she was setting up ink and a gun, so I went that route instead.

It hurt like a BITCH. Not as bad as my lower back or my collarbone. However, the face is quite sensitive. Whenever the needle moved toward my nose, my tear ducts just emptied.

But she did amazing work, borderline magical work. From a distance, I don’t think you would ever guess they were entirely fake. I need to return to make them a bit thicker and fill them in, but I have absolutely no regrets. Having eyebrows again, putting down the pencils reduced my depression remarkably.

Reactions

If this experience and my feelings about it were a fire, the reactions of others would be a downpour of accelerant on top of it. I am an empath. Childhood trauma has made me keen on reading people. Everything said and unsaid, every mannerism and behavior cross referenced against the baseline means something. It all speaks to me in a silent language.

This skill is useful. I make a great unofficial psychologist. I do well with customers and networking at work. Yet, at times, all this subtext, all this extra information hurts.

Times like now.

I have a great support system. I have people who are there for me, who care about me, who are willing to help me. And people are all very supportive… at the beginning. When the hair falls out and it’s new and the start of it all, they are all there with full cups of sympathy. Yet as it drags on, as it becomes every day, they fade.

Just as I began to process things, as they began to really hit me and become my life, people started to move on with theirs. And why wouldn’t they? It’s not their life. It’s not in their day-to-day. They have processed it at arm’s length and moved on. Just like anyone would.

I am just acutely aware of when that line is crossed, when my pain becomes redundant static to a person.

I can also read what they don’t say about it. I can see how much they pity me. I can feel how grateful they are not to be me. In all their awkward flinches, the way they just feel bad for me disgusts me. It makes me more insecure than being bald ever has. I never wanted to be that person. I never wanted to be looked at that way.

And the toxic positivity. I hate the words just and at least.

It’s just hair.
You can just wear a wig.
At least it’s not from cancer.
At least you can just wear makeup.

Poison fucking words to minimize my experience and make me feel weak to be grieving. I realize how asinine it is to be grieving over hair. I know how much worse it could be. My feelings don’t give a shit. They twist me up in knots just the same.

I appreciate the intention. And I know trauma makes people uncomfortable and they don’t know what to say. Often, there is nothing right to say. So I’m not mad at them. I hate the words, not the people trying to help or comfort. I’m mad that I have to be here at all to have these reactions.

I don’t want to be brave. I don’t want to be told I’m beautiful even without hair.

I want someone to crawl into the hole with me, hold me in the dark and say fucking NOTHING. But most people avoid that hole their entire lives. They may be looking down at me extending a hand, but I don’t want to be seen in the blinding light up there. I just want to keep sinking.

Coping

I have shaved my head. I have tattooed my scalp. I have tattooed on eyebrows. I have bought fake eyelashes.

I am trying.

The obvious solution that is always thrown in my face is wigs. And I have tried them. I shaved my head in October so, with Halloween, prime wig season. I picked up some cheap, ridiculous ones to try. I am ridiculous, and I also thought it would be easier if I didn’t feel like I was trying to get away with being bald. Sheer white or glitter red would obviously be a wig.

So I tried one in public. I wore a stark white bob out to a show. My head felt warm for the first time. I didn’t think about people staring at my scalp. I noted the weird glances, but overall, I felt okay about it. Then two of my friends drunkenly read me down about how horrible of a wig it was.

I appreciate honesty. I always want to know the truth rather than have my feelings spared. But I didn’t ask. And I definitely didn’t ask to keep hearing it. I was too raw to receive criticism. I was like a baby fawn trying to stand, and it was just a kick over. I was too weak and sensitive to receive the honesty I usually demand.

I haven’t really wanted to try wigs since.

I did wear one for Halloween and a dance performance that was well received. My Morticia.

However, the feeling of the long hair, the way it brushed my shoulders and swung from my head, was extremely triggering for me. I was acutely aware of all the ways the hair felt and how strange it now was, how much I didn’t have it anymore and missed it. It highlighted the loss. It tickled the basic sensations I was missing. This was also when I was quite tender, so I could barely handle it.

Wigs also feel like faking it to me somehow. I am over disclosive and have no filter. I advertise most things about myself. I find that putting on a wig or drawing on my eyebrows feels like lying. The disguise makes me more insecure than the ugly truth.

My entire life, when I put makeup on, a hateful and insidious voice whispers, just putting lipstick on the pig. Putting a wig on that has that voice screaming about trying to pass a pig as a person.

Instead, it’s hats. My hat collection has exploded. Usually, I rock a black beanie in the Joe Pesci in Home Alone vibe. But hats are where I hide. I know they don’t erase my lack of hair, but I feel more comfortable with just that layer of cloth.

Feelings

In short, I am not coping well. If that was not already obvious.

I am a fucking mess. My depression and insecurity have filled me with every impulse to become a hermit. I have lost myself and I’m grieving, all the while feeling stupid and weak for being so affected by just hair.

Every time I get a foothold on adjustment, the Alopecia is like, “but wait… there’s more!” I settled with losing my hair… then the eyebrows. I managed that… now the eyelashes. Every addition kicks me back farther than where I started. I don’t think I would be okay even if we stopped at my head, but the constant kicks make it harder to even know where I am. Eventually, I will run out of hair, but by then, I may be an emotional disaster.

If I’m not already.

Mirrors are the worst. Maybe even more painful than pictures (obviously I still take plenty of pictures) and people’s reactions. I could be having a great day, feeling comfortable in myself again, allowing myself to interact with people and be happy, letting myself feel good. Then I see a fucking mirror. I see that stranger, all that hairless flesh, and it’s all ruined. I start all over again.

I’m a very social person. I’m an exhibitionist. I take a shit ton of pictures. I am a dancer and perform on stage. I like to be seen. Shit, I need to be seen. Now, I don’t want to be. I want to cover my massive bald head and fake eyebrows and fake eyelashes and hide.

The lack of socialization is already hitting me (hard) in just these few months. It’s not who I am to not be with people. It is definitely not who I am to not share what I have going on unfiltered. But I can’t keep saying the same thing, and I can’t take their eyes full of that damned pity.

The isolation is amplying my depression exponentially.

When I shaved my head, I told myself I was done performing. I had already worried that I had gained too much weight to be on that stage, and I was convinced I was not at the same caliber as the other performers in the shows. But I loved that public expression of art and needed the community.

I am trying to force myself back in. I changed almost all of my profile pictures to bald pictures. I signed up to perform a duet later this month. I am making plans out in the world. I don’t want to… but I have to.

It seems trivial to resign from life over hair loss. Just hair. But I would love to see how everyone who said that felt with chunks of hair in their hands, throwing hats across the room as they cried on the floor.

Losing control of my body and how I physically express myself has fucked me up. I can’t keep trying to deny it. If I ever want to get over it, I have to accept it and what it is doing to me.

I have already written a horror short infected by this experience. Now to find a place to release it into the wild. If nothing else, I can hide in my words.

Christina Bergling

https://linktr.ee/chrstnabergling

Like my writing? Check out my books!

  • Followers – You never know who is on the other side of the screen. Followers is a mystery and thriller that blends women’s fiction with horror.
  • The Rest Will Come – Online dating would drive anyone to murder, especially Emma.
  • Savages – Two survivors search the ruins for the last strain of humanity. Until the discovery of a baby changes everything.
  • The Waning – Locked in a cage, Beatrix must survive to escape or be broken completely.
  • Screechers – Mutant monsters and humans collide in the apocalyptic fallout of a burned world. Co-authored with Kevin J. Kennedy.
  • Horror Anthologies