Lately it seems the hardest part of the day is getting out of bed – not because I don’t want to get up, but because bed is safe. Getting out of bed means a couple of things – 1. It means that I will inevitably look at the pillow and space around my head to see if I have shed any hairs, and 2. It means I will need to get in the shower and go through the more-often-than-not painful process of seeing what falls out post-shower.

I used to be more concerned about the hairs in the bed when I had white sheets. Now, it seems, hotels are more of my nemesis and it’s almost as if I hunt the hairs when I get up in the morning not able to believe that I have found them all. Changing the color of sheets on my bed, I don’t tend to see them anymore and am not so sure that is actually as a big of a problem as it used to be. Old habits die hard, and I still check anyway.

The shower is still difficult. I have been going through the ins and outs of Alopecia Areata since summer 2010 – three years now. I have been fortunate enough to have never lost all my hair, which is why I always feel so guilty writing what I go through. I guess the hardest part being that I watch them fall out one at a time and sometimes wonder if it would just be easier for them to all come out at once. Get it over with. I am in what I would call an “out” phase because the hair is coming out again. Just when I think I’m doing pretty well…So, I stand in the shower almost afraid to touch my hair. If I just lightly apply the shampoo and conditioner, maybe I can save some of those hairs hanging in by a thread. I wrap my hair in the towel careful not to pull. I typically apply a little make-up before taking my wet hair from the towel to comb (I used to say brush, but no brush is now needed for my what was once thick hair). It is a moment I dread because I know hair will come out.

I try to remind myself that losing hair is perfectly natural; that we are supposed to lose 100 or so hairs a day. Yet, for people who have alopecia, every single hair lost is somehow much more significant. It is difficult to accept I now lose any hair naturally. I try little tricks with myself like not facing the mirror as I comb through it and throwing any lose hairs that might be dangling straight into the trash can without looking to see how much it was that came out. I have also made vows to not pick up hairs I see on the floor – bathroom or elsewhere. I have always had paranoia about seeing hair on the floor and needing to clean it, but in the last 3 years it has become an obsession – one I desperately need to kick. I even time myself making sure that when time is up, I leave the bathroom whether I’m ready or not.

It would be awesome if these tactics worked, and they do sometimes. Then, other days, things don’t go quite as well. I crack and start gathering hair on the ground. I will find the spots I know hair is starting to fall from and pull the hairs just to make sure they are still coming out. What am I really expecting – as if they do not come out, my day will be exorbitantly better? The truth is that those hairs are likely going to fall out whether I pull them or not, so why make it easier for them?

This time, I am going into my second bout of what the dermatologists think is Alopecia Ophiasis. Basically, the hair loss occurs along the perimeter of the scalp creating what can best be described as a receding hairline. I was told it is pretty darn tough to treat. Awesome! When I got rid of it last time, I was hopeful that it would not happen in that pattern again. Now, all that hair that has grown back is falling out again. Ugh, I went through the process of literally having to grow back bangs from stubble. I’m not sure if losing hair or having to grow out bangs is more of a pain – sometimes it’s a toss up. And so, I have conversations with my hair as I stare in the mirror. I tell it that if it just stops coming out and grows back this one time, I will make sure to never be stressed again. Totally doable, right? Wrong. And I really should not be trying to make negotiations with my hair. It’s dead. It doesn’t care. And my fiancé looks at me funny.

The showers are the worst, but I’m sure I think about this condition at least a hundred (or what feels like 100) times a day. Sometimes it is around the people who know me well and knew me when I had thick hair. I wonder what they see now. I do ask, sometimes, and they tell me that it is not noticeable at all. Usually, though, I am often too scared to ask, which is ridiculous because I’m positive I am far more critical than any of them would ever be. Then, there are times, like sitting here in this coffee shop right now with my back neck exposed to the rest of the patrons, where I overcome my fear of what people think and forget about what or if they are looking. I give myself a little reality check when I realize that people are not really looking, they don’t really care, and you really are not that important to complete strangers.

It is a journey, though, right? Had I written down all my thoughts when this first started happening, I would have been a complete wreck. I have actually come a long way, though not there yet. I still find copious amounts of pleasure in going to sleep at night, laying my head on the pillow and forgetting about the hair until morning.
My hope in all of this is being able to use the experience to give back. There is something I am supposed to be doing with it, and it is most definitely not sitting in a dermatologist’s office receiving painful injections as I plead with them to provide me any news on advancements for a cure. I suppose you could say I have been graced with something unique, something non-life threatening, something that can and is already becoming incredibly empowering to know that I am much more than my hair.

I often try to write about it, but stop. I feel like because I am not completely accepting of my condition I have no right to put it out there for others to see. But, the therapy of writing about it may actually be what I need to overcome it. Not sure yet.

“She generally gave herself very good advice (though she seldom followed it).” –Lewis Carroll, Alice’s Adventures in Wonderland