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.
I feel like I’m giving up on myself and letting this beat me.
But I also know I’m not. I’m trying to take control. This condition has consumed so much of my life for the last nine months and I’ve missed out on life. It’s taught me a lot, but right now it’s time to get back to being me – with or without hair.
As difficult as it is, this decision has given me peace of mind, and peace within myself. Finally, after what seemed like an eternity, I can relax and get on with being me – the carefree and fun me. I don’t have to stress about what will happen or the unknown, I can simply let it be. Instead I can focus my energy on becoming strong again, both physically and mentally, because both have taken a tremendous hit over this process.
It’s the little things that I’m looking forward to the most, like being able to make plans (in advance) to catch up with friends and family, knowing that there isn’t a risk I’ll feel overwhelmingly sick or tired when they come around, having a bit of extra cash in my pocket, and simply but most importantly - just knowing that each day I am actually 100% in this world and that I’m genuinely making the most of every moment.
I know, it sounds cliché. But when you spend months on end not being yourself and not working to your full capacity, it’s genuinely all that you look forward. Just being normal again.
Alopecia is an autoimmune disease – your body recognizes that your hair is ‘foreign’ so tries to fight and attack it off, similar to how it attacks a virus etc. Immunosuppressants are drugs that lower your immune system to try to stop that process happening – it’s a very fine balance in trying to get them right. Some people get results, some don’t. The problem with alopecia is that you can’t actually predict it – I may never get my hair back, or it might suddenly start growing back in six months time, or ten years time. They just don’t know.
Have you ever lost your hair? Did it affect your self confidence?
Feature image: Supplied.
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I also have alopecia and know so how you feel. Well done for letting go of the treatments and accepting what lies ahead. As we (who have alopecia) all know what lies ahead is uncertain. No treatment or diet has been proven to work. It will come back if it wants to and we cannot control that. And you look freakin' awesome!!!