My Alopecia

Posted by: HSP Woman on: June 18, 2007

• In: agoraphobia | alopecia areata | anxiety | anxiety attacks | benzodiazepine withdrawal | body image | external validation | panic | panic attacks | panic disorder | shame | Xanax
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When I was 12, I started a new school.

It was hell. All the other kids had been together since kindergarten; I was an outsider.

Somehow, I eventually became a member of the so-called popular group
(as unpopular as I was). Thinking back, I am sure it was because I helped the others with their homework (well, actually, I usually did their assignments). In fact, I am sure now this was the reason I was accepted. I was used, and I suffered humiliation every single day for two years. Oh, how I wanted to fit in, to be liked…

I was teased incessantly for my “brains” and for my “bongo lips,” whatever that means. Can you believe it? My lips? Every single one of those junior high school friends would pay big money today to have my lovely, full, very kissable lips. No doubt about it. Remember, this was 1980 — pre-collagen or whatever women (and men, no doubt) use now to plump up their lips.

Then, late in 7th grade, something else happened to my body. I started losing hair in patches on my head. At first the bald spots appeared in nickel and dime-sized patches. Silver dollar sized spots were next. I became paralyzed with panic when I thought this might be the next thing I was teased about.

Hair on my forearm fell out in small areas, too. Then my eyelashes, but just the bottom rows. My eyebrows also started to lose hair, but only on the inside half.

Finally, in 8th grade, most of my pubic hair fell out — and just after it had finally grown in!

A few adult women in my life half-joked about how great it’d be to get rid of their pubes my way. A natural, waxless, scream-free Hollywood!

I, however, wasn’t so elated. Confession time: I seriously believed no man would ever consider marrying me if I had a bald vagina. The thought panicked me — and I was just thirteen.

What kinds of messages are we giving young girls? Where did this self-hatred — this superficiality — come from? Seriously. I was raised by (very) feminist parents. I was told I was beautiful every day, with or without bald spots. I just didn’t believe it.

Obviously I was suffering from very low self-esteem in addition to the alopecia areata.

What is alopecia areata? I found this great site that summarizes it better than I can:

Alopecia areata (al-oh-PEE-shah air-ee-AH-tah) is a highly unpredictable, autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. This common but very challenging and capricious disease affects approximately 1.7 percent of the population overall, including more than 5 million people in the United States alone. Due to the fact that much of the public is still not familiar with alopecia areata, the disease can have a profound impact on one’s life and functional status, both at work and at school.

It occurs when one’s immune system mistakenly attacks one’s own hair follicles. Alopecia is an autoimmune disease, like Hashimoto’s thyroiditis (which I also have).

When I first got treatment for it, the dermatologist told me it was due to stress and anxiety. This made me feel even guiltier about being the new (desperate) kid in school. If people could just like me… I blamed myself for not being relaxed enough, normal enough.

Today, scientists know it’s definitely not caused by high anxiety. Just having read one or two posts of mine, you’d know I be completely bald if this were the etiology!

Some important facts:

• Alopecia affects up to about 1.7% of the population (up to 5 million people in the US alone).

• It starts usually with one or two small, smooth, round bald spots on the scalp.

• Men and women are equally affected.

• The bald spot episodes occur in a very unpredictable course throughout one’s life. The onset can be sudden.

• Alopecia areata often occurs in families whose members have had asthma, hay fever, atopic eczema, or other autoimmune diseases such as thyroid disease, early-onset diabetes, rheumatoid arthritis, lupus erythematosus, vitiligo, pernicious anemia, or Addison’s disease.

• There is no cure.

There are treatments that may (sometimes) help stop the hair from falling out, although such methods can be very messy, impractical, and painful.

From 1980 through early 2007, I opted for the more painful treatment: cortisone injections. Here’s what this web site says about cortisone injections:

The most common treatment is the injection of cortisone into the bare skin patches. The injections are usually given by a dermatologist who uses a tiny needle to give multiple injections into the skin in and around the bare patches. The injections are repeated once a month. Both the needle prick and the slight tingling are usually well tolerated and there is no discomfort after leaving the doctor’s office. If new hair growth occurs, it is usually visible within four weeks. Treatment, however, does not prevent new patches from developing. There are few side effects from local cortisone injections. Occasionally, temporary depressions in the skin result from the local injections, but these “dells” usually fill in by themselves.

The operative phrase here is “uses a tiny needle to give multiple injections.”
The BIG lie here is the part that says the injections are “well-tolerated” and that there’s “no discomfort.” That is crap. In my many years of experience, injections suck. They’re painful like hell. And, for someone with panic disorder and phobias about doctors and all things medical, these monthly injection parties can be majorly panic-inducing.

I cannot even look at a needle without having a panic attack. Imagine feeling twenty-odd needle pokes in your skull.

And, my doctors always tell me I’m so unusual because, uh… I bleed. Apparently, not many people bleed as much as I do after two dozen needle pricks.

To top it off, my sweet, Barbie doll of a dermatologist cannot stop saying, “Ouch!” “Ouch!” in this baby voice each time she stabs me with the needle. I swear I want to turn the needle on her each time she uses her little girl voice around me. How insulting to treat adult patients like children… Then again, some doctors can be rather insulting, no?

So I fired her. I left her wanting to possess my naked scalp. Like most doctors who could use a few more brain cells, I divorced her.

Yes, about 5 months ago, I decided not to return for any more injections. Despite having four months of injections, my most recent bald spot continues to grow and grow and grow…

It’s funny, but this bout of alopecia started the same month I finally quit Xanax. Equally curious, this episode is more dramatic than any previous one. I wonder if there is a connection? Hmm…

It’s bigger.

It’s faster.

It’s more dramatic…

I’m sharing this with you all because I have been so ashamed about my alopecia areata for the last 27 years. I have felt diseased, deformed, unlovable.

In fact, I never would have dared to divulge this deep, dark secret of mine had I not stumbled across this blog called My Alopecia Areata. Miguel, a blogger who also has a type of alopecia, was brave and courageous enough to post photos of his affected areas. He really inspired me.

So I am starting to make peace with my alopecia, slowly but surely. But, like I said, this episode is unique. I can tug on the borders of the bald spot and get a handful of hairs. It’s disconcerting because I predict this will be the very first time in 27 years that one of my bald spots will be very obvious, very soon.

Do I get a wig? A Britney-esque cowboy hat? Hair extensions? Or do I shave it all? (Actually, all these options seem pretty Britney-like!)

I think I’d rather shave it all and finally be free. It’s just so hard, to be honest. I am not in the best shape, due to the agoraphobia. I don’t have a tan, again due to the agoraphobia. It’s just hard for me to go outside, impossible for me to go into a gym. Plus, on top of everything, I am tapering off of benzodiazepines.

To be bald and pale and agoraphobic and overweight… Not the greatest recipe for feeling sexy! Not impossible, but not easy.

But, hey! Even as a bald, heavy, agoraphobe, I’ve still got my beautiful bongo lips!

Outstanding!

Now, if I could just get back my naturally-bald vagina!