Living with AI

Note: This was originally published on my old blog on 8/16/12

I have an autoimmune disease. This does not define me. Over the last five years, it has
always been there. Not visible, but haunting me nonetheless. My disease was in remission
for close to four years. Spanning almost the entire time I have lived this new life in DC.
After that length of time the fear of a relapse diminishes. It becomes easy to believe that
the worst is behind you.

I have little to complain about. My disease is superficial. It does not stop me from
working, going outside, enjoying time with others. I don’t have to take it easy. I’m
never in pain or even uncomfortable. In many ways, the side effects of my disease are
psychological.

I have alopecia areata. In late 2007 my hairdresser discovered a dime sized bald spot in
my scalp. By April of 2008, half of my hair was gone. In a few short months, I realized
how much I defined myself by my physical appearance. I began to notice how others did
as well.

photo

I am lucky. My hair didn’t fall out because of cancer or some other side effect of a more
vicious disease. It was almost embarrassing to explain my scarf to strangers. “Nope, just
my hair. Nothing serious.” That was of course true factually. I wasn’t dying, but in many
ways my heart was broken. Not because I believed that I was now “ugly” or “unworthy”
because of my lack of hair. My devastation was because I had no answers.

I did what most people do. Doctors always have to have the answer, right? I was taught a
hard lesson that spring. After half a dozen doctors and a small fortune, I discovered why
they call doctors’ work a “practice”.

Here are a few facts:

1. There is no cure.

2. There are no universally recognized effective treatment (more on this in a
moment).

3. Stress does not cause alopecia. The exception is with individuals who suffer from depressive illness.

4. Your body begins to recognize your hair as a foreign object and rejects it
(why it’s considered
autoimmune).

5. The cause is unknown.

6. The hair will come back.

Although I have cited sources for the facts above, all of these things I learned from
the doctors who in the end couldn’t help. Many were quick to suggest going to a
dermatologist for corticosteroid injections. Of course I did this, despite being reassured
by every doctor I encountered that it would likely not help.

Why suggest a treatment if you are certain it does nothing? For the psychological benefit
of the patient? What about the potential side effects of the corticosteroids? How is this
responsible medicine? I am no longer interested in treating a side effect before looking
for a cause.

Number six on this list is why number one will always be true.

I know that sounds a bit cynical and maybe even radical, but I believe that completely.
The dirty little secret is that when a disease has a prognosis as good as this (the hair more
often than not comes back on its own), there isn’t money in research. No research = no
advancement in understanding or combating the disease.

I have accepted all of this. Despite that, discovering that I had indeed relapsed did not
make it any easier the second time around. I have no way of knowing if this will be like
the last time. The odds are that it won’t. Most times initial outbreaks in adults result in
full recovery with permanent remission. Those who do relapse typically see flare ups that
are smaller in scope than the original.

My hair will come back. I’ve done this before. This does not require an extreme amount
of strength to overcome. Despite these facts, I can’t help but feel a bit devastated.

Lastly, I do want to point out that there is a great group, the National Alopecia AreataFoundation (NAAF) that provides support for those living with my disease. They
have been able to raise funds to help develop “safe, effective, affordable” treatments.
Hopefully one day I can happily say I was wrong about number one.

Advertisements
This entry was posted in Old Blog. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s