After nine months of giving it my absolute all, today was the hardest decision that I have had to make – stopping treatment.
For nine months I’ve thrown everything into trying to beat this shitty disease – I’ve battled the side effects of steroids, and tried two lots of immunosuppressants that each brought with them their own problems; weight gain, intermittently losing feeling in my hands and feet, mood swings, nausea, dizziness, and drowsiness – just to mention a few. All in the hope of getting my hair back.
But this week, I feel like I’ve lost the battle. I feel it has defeated me.
My eyelashes are now almost gone, the last little hairs I’d been clenching onto so tightly. Too tightly it seems; I literally pulled them out in clumps.
The medications were supposed to stop that. Prevent it. They didn’t.
Now this is it.
In April 2015 I found a small patch of hair was missing on the back of my head. In August, it began rapidly falling out – I was pulling out clumps at a time. From September 1 to September 8, I lost close to half the hair on my head. So I shaved it to take control. I always thought it would come back. Within a couple of months after that, I lost all the hair on my body except for my eyebrows and eyelashes. My eyebrows began to go in January, and in the last four weeks my eyelashes have disappeared too.
It is so incredibly difficult to come to terms with the fact I cannot do anything about this. I can’t control it, I can’t predict it and I can’t change it. I lost my identity when I lost my hair. I had to figure out who I was – an identity that wasn’t based on how I physically saw myself. I was so confident that I would get my hair back, that I never properly said goodbye. Now I feel like I’m grieving something that I can barely remember.