I AM NOT MY HAIR!

I remember the very first time I woke up to find hair on my bed. I was puzzled, naturally, but didn’t give it much thought. This was the first time I had chemicals in my hair and so I thought it was okay, almost normal, that it happened. When you are combated with swollen joints, cannot walk without help, cannot write without writhing, willing yourself not to cry and back pain that just won’t give you a break, the last thing you pay attention to is hair on your pillow. And so it went on. For 3 and a half consecutive years, my longest flare, I lost more and more hair and by this time, it had started taking its toll on my self-esteem. I never told anyone about my hair loss. My dad would bring it up because he could see I had less and less hair and my hairline, or what was left of it, was fast receding. Stephanie became so concerned about its effect on my confidence that she purposed to wake up earlier than I did to collect the hair so I wouldn’t find it on my pillow when I woke up. Bless your soul Steph because that did wonders for my esteem.

This hair loss is what is referred to as alopecia. Alopecia is caused by a great number of things; from the condition itself i.e. Lupus, to the drugs taken to manage lupus such as chemotherapy (yes, chemo is used to treat Lupus patients too) and steroids.

I talk about it today because for all the time I have been sick, I have been losing hair. I decided to go with dreadlocks in the hope that it would minimize the hair lost. And it has. But that doesn’t change the feeling every morning when I take off my stocking and I have hair falling to the floor. It breaks my heart. And I know, I am not meant to be my hair and everything but in a world where I have/am losing almost everything there is to lose, I have to be devastated. It is not catastrophic. I cannot compare it to the feeling I get when I feel sore and realize another clot just popped up. Or the headache that sends chills hoping this has got nothing to do with the stroke. Or the tingling or numbness that takes over my feet and arms and I curse my neuropathy. Or the pain when I realize I may have slipped another disc in my spine. Or my demyelination is becoming worse by the day and eroding my back. Of course, nothing can compare to this pain but my hair loss is just as much pain for me as the rest are. My alopecia causes situations where I cannot get my hair made because the pain is too much. So next time you bump into someone with Lupus who has shaggy-looking hair and you really feel the urge to make a comment about it, don’t! Things are not always as they seem. It is not just a simple case of ‘laziness’, there are actually genuine and valid reasons behind everything. Sensitive scalps, too much hair falling at a time, pain at the slightest touch so just leave people be. I’ve had situations where even my hairdresser wonders why there is a patch of no hair yet 3 weeks ago, it was fully covered. I had to sit him down and explain the intricacies and how delicate my condition makes my hair. And then I bump into someone and they admire my locks and tell me just how healthy they look. And in that moment, I forget about the amount I’ve lost, and appreciate that that I still have left. Because in the end, I am not my hair!

So, yes, I lose my hair on a continuous basis but I will not be limited to identification just by that. I am so many things and if you are to identify, identify me by any of those other things. And to all my people who have Lupus, whether a ‘veteran’ or just recently diagnosed and your hair is thinning and/falling off, don’t you worry. Never worry about such trivial matters as hair. It will grow back, or it won’t, you are greater and fighting a greater battle than hair loss. So keep at it, keep fighting, keep winning, and keep conquering!

I’ll leave you with a few words from India Arie, “ I am not my hair, I am not this skin, I am not your expectations, no. I am not my hair, I am not this skin, I am the soul that lives within, It’s time for us to redefine who we be, You can shave it off like a South African beauty, Or get in on lock like Bob Marley, You can rock it straight like Oprah Winfrey, If it’s not what’s on your head, it’s what’s underneath.”