If I’m going to tell you about my alopecia journey, I need to take you back to the beginning. When I was 18 months old I became very ill. I was already covered in severe atopic eczema and had now been diagnosed with asthma; I was only a baby. Throughout my childhood I had been back and forth to the hospital to see some sort of consultant for that disease or another consultant for another disease. (Hats off to my mum as I was NOT an easy baby!!) and I was not getting better. My skin was weeping from blisters that had popped and started to scab over and I, being the very itchy kid that I was, kept picking at my skin until it was red raw. I was very uncomfortable and in a lot of pain.
I would have bandages covering my raw skin and in summer that made me even more miserable. I had to sleep with mittens tied on my hands to stop me from scratching myself until I bled and every morning when I would wake, tired may I add, my mum would have to hoover the bed and get it changed from all the dead skin that had shed during the night, then the process of ointment baths and bandages would start all over again. I would be on steroids too for my asthma, they were little pink tablets that would be dissolved in water for me to gulp back, to hopefully ease the inflammation that was my entire body; it never did help.
Secondary school was OK, although I would still have major issues with my skin, I also had an amazing group of friends who would be kind to me, despite me still being covered in eczema and looking like a mummy, by now I was also very overweight due to the ridiculous amounts of steroids I was ingesting and applying to my skin. Nothing worked for very long, and would have its own nasty side effects, but at this point in my life I was so used to having things wrong with me that I just got on with it.
After probably thousands of hospital visits my parents, god bless them, wanted to try the holistic route to see if there was a way to help my skin the natural way. They took me to a Chinese herbalist where he ended up selling them some tablets that looked like horse tranquillisers for me to take daily and that would sort me out, along with changing my whole diet to only being allowed to eat tuna and salmon. (I know, very drastic). Anyway, having been on this diet and these massive tablets for about a month, I ended up falling out of bed and knocking my arm against my bedroom door. This resulted in my skin splitting open and I ended up in hospital for 7 weeks. Again, I had become VERY ill.
Light at the end of the tunnel?
From there on out I decided that I wasn’t going to take any prescribed medication for my eczema and about a year later my skin had cleared. Anyway, for once in my life I had heavily scarred but clear skin and I felt ‘normal’ for the first time ever. As I started to live with lovely clear skin my asthma had developed into a more of a serious issue and I was having regular attacks, which meant regular hospital stays. I still wasn’t free.
Throughout my 20’s my asthma was critical, and although I was very unhealthy and ill, I still managed to get a degree and a masters degree. It kept my mind active and that meant some freedom from my illness. I loved studying and focused on that. I ended up seeing a consultant who eventually prescribed some miracle inhaler and my asthma and my sanity improved almost over night. I felt that this time, having gone through everything that I was on my way to a life free from illness and pain, once again I was free.
Is that a bald patch?
By the age of 30, I had lost 226lbs, had my asthma under control, was looking better and feeling amazing. For the first time in my life I felt completely and utterly happy to be in my own skin, of course that was about to change. I turned 30 on August 9th 2013 and was completely bald by mid February 2014. Life is cruel.
I remember it was a normal Friday afternoon at work and I noticed a tiny bald patch near my hairline where my parting was. It didn’t really concern me at the time but it just felt weird. What I failed to mention was that, the previous weekend my scalp was burning so bad I was even considering going to the emergency room. It lasted about 15 hours but then, as suddenly as it came, it went and I was feeling absolutely fine. So, going back to that Friday afternoon, I didn’t associate my tiny little bald patch with the burning scalp. I thought I might have done something to cause that little bald patch myself, but it just wasn’t a concern.
Just like every illness I’ve had it’s always got worse. So, of course this was no different as over the next 10 days my hair fell out in clumps and I had no hair at all by the 10th day. I was now completely bald. I hadn’t even got the chance to see my GP, before all my hair fell out. But when I did get to see him, I was referred to a dermatologist and saw one quite quickly.
When it came to the nearing the end of February I had lost all the hair on my body and my nails was completely gone and it was starting to affec my toenails too. I didn’t know at the time as I hadn’t seen a Dr or Dermatologist, but I came to find out (a month or so into this journey) that I had Alopecia Universalis. My Dermatologist hadn’t seen a case like mine that occurred literally overnight, until he met me! Yay! The fact that my nails were being affected showed him that this was very aggressive and that my body was really working hard to fight against these normal things! You know, like hair and nails! Goddammit!
Living, DEAD PRETTY & Hope
I struggled tremendously at first, and being completely transparent, I still do on occasion, but I’m in a more positive space now. So, here I am in 2018, still bald, my hair hasn’t grown back an inch in the last 4.5 years and my nails are absolutely ruined. So how am I staying positive? I’ve tried to make the most out of my situation, I’m not alone and through this journey I’ve met so many wonderful people who have made me feel ‘normal’. I also have fun with my crazy coloured wigs and makeup.
My way of making it through is to make it fun, I wear different wigs almost daily, I have started my own brand called DEAD PRETTY OFFICIAL, where I designed and manufactured eyelashes primarily because I’ve only found a handful of lashes that I can wear comfortably and I wanted to change that. I love makeup and everything beauty related, this allows me to make myself up when I feel my worst, when I feel I have lost the old me.
You see, when you’ve lost your hair/eyelashes/eyebrows you’ve essentially lost your identity, your what makes you, look like you. Makeup allowed me to regain some control and get myself back. I had my brows tattooed, which instantly gave me back my face, I started to see the old me when I looked in the mirror. Over the last few years I’ve had so many people tell me ‘its only hair’ and that ‘you could be worse off’ and that ‘there are children dying out there’, all of which is true but it does NOT negate the way you feel internally. You can cry. And you can certainly be angry at the world for not understanding why you’re hurting so much.
Once you have accepted the fact that, if like me, your hair is unlikely to ever come back you regain some of the control you’ve lost along the way. You start living your life, albeit differently, living nonetheless. Where I am now is far from where I was in the first few months of losing my hair, although I’m not ‘healed’ yet, and I probably never will be. I am bitter, and I am sad on occasions, but the majority of my days now are a bit brighter, and that’s all I can hope for.