My name is Ronia Murray, I’m 17 years old, and I have Alopecia Universalis.
I doubt my story will have an impact on anyone, and mostly I’m just writing this as an outlet for myself- but I promised Liz I’d create my profile as a Teenage Friendly B*tch Page! So if you have anything to say or give out about or just want to chat (all ages are welcome!) please feel free to visit my profile or myself on Facebook!
The Start: So anyway, I developed Alopecia at the end of October 2011. I had just come back from climbing Kilimanjaro, and since I had never heard of alopecia, I totally freaked the bean! I didn’t know if it was Cancer, or if I had picked up something in Africa, I had no idea. That was probably the scariest part, but for the most of it, I had just ignored it, thinking it was just a little shedding of hair- like how my giant golden retriever does in the summer! It was only when I was with my little sister one day and had my hair tied up that I realised the extent of my hair loss. My sister said (and I quote) “What the hell is wrong with your hair!” I ran into the bathroom to try to get a look, but obviously, I couldn’t see the back of my head! So I got her to take a picture of it, and sure enough- half of the back of my head was missing! That was when I realised this was serious. So later that night I tried to tell my mom about it- but I just burst into tears. She agreed to take me to the doctors and get sorted out, and by the time we got there it had fallen out even more. My forehead and behind my ears had gotten very thin, so the doctor took a few pictures and sent it to the dermatologist- but he was very busy and probably wouldn’t see me for a few months.
The Explanation: My doctor was the one who thought it could have been alopecia, but she still had no idea what it was, it felt like no one was giving me answers! I was distraught and even worst of all I started to isolate myself from my friends and my boyfriend. I felt like a freak and I didn’t think they’d feel the same towards me if they knew, but eventually, it had gotten so bad that I needed someone. My mom, as supportive and loving as she is! Couldn’t fill the gap my boyfriend of one year could- so I had to show him. Of course, he was sympathetic and loving and said we would sort it all out, and we just recently celebrated a year and a half of being together! Just goes to show you should give more credit to the people that love you! Just because your appearance has changed slightly doesn’t mean you have!
Leaving School: Weeks had passed, and I was losing more and more hair by the day. I was begging my mom to pull me out of school- I couldn’t handle the shame of it. Teenagers are very judgemental, and appearance is everything to them. Imagine if they knew what my appearance was turning into.
But my mom wouldn’t budge. She had no idea how traumatized I was- sure how would she when I was just pushing them all away? So she didn’t want to pull me out of school. But eventually her and my dad had a talk with me, and when they said I could stay out of school for a few months- the relief I felt shifted the whole room! We talked to my principle, and so I got to stay at home for a few months until I got my act together.
The Lift: At this point it was just before Christmas- and my hair was falling out rapidly. So I said enough was enough. I was sick of watching my hair falling out. I wanted to start watching it all grow back. So I took a razor and shaved it all off. My loving boyfriend did the same- bless him but it was hard watching his hair grow back while mine didn’t. It continued to fall out- but not as obviously, which helped to lift my spirits. Soon enough we saw the dermatologist- who told me I had ‘Alopecia Areta’- he explained to me what it was and that my case was hereditary and linked to the fact that I have asthma and eczema. I had gotten some peace of mind, but not totally, it still wasn’t fair.
The people in my school had started to realise I hadn’t been in school for a while, and they started to ask questions- of course, the rumour about me being pregnant had spread! As if I didn’t need any extra pressure! So I decided I should clue in a few of my close friends. I told them one at a time, or I got my boyfriend to tell them- and they stood by me, I couldn’t have asked for anymore. The fact that they still loved me helped me to cope and not feel totally alone.
The Fall: By now my two months was up. And I had to go back to school. I had bought a really realistic hair piece- which looked like my own real hair- except for the fact that I used to have a giant cow-lick on my forehead! So that was a noticeable difference! The first day went fine, I was cautious, thinking people could’ve pulled it off by accident, or the wind catching it and whisking it away- but none of that happened! I really thought everyone was looking at me and it was so obvious! But eventually, I realised people’s lives actually don’t revolve around me- they have their own issues to focus on!J I had a few comments about my hair, how nice it was, which just made me more delighted, but slightly weary. It was only when I got home that my ‘good day’ was destroyed. My boyfriend sat me down to break the news. It’s a good thing he did or I probably would’ve fainted. Apparently, word had got out- and everyone knew my hair was falling out, and that I was wearing a wig. I was the talk of the school. And the next few days were so hard. kids cramming up against the window to catch a look at the girl with the wig. I was angry at the world and hating myself. It was my own body which had done this to me- I wanted to die! to make it worse we went back to the dermatologist once I noticed the hair on my legs and my arms had gone, and that my eczema and asthma had gotten uncontrollably bad, When I told him this- he didn’t even ask to look, he didn’t even examine my arms or legs- he knew I was a lost cause. He told me it had progressed to ‘Alopecia Universalas’ and that there was 10% chance it would come back. But I only focussed on the 90% chance that it won’t. That’s not good odds for a teenager who lives in a society where looks mean everything.
I was spiraling downhill, and wanting a quick and easy ‘get away free’ card, thinking back now on the thoughts that crossed my mind- I’m disgusted I even considered stooping that low- letting this disease beat me is just a ‘No-Go’.
The Beautiful New Me: It was only for my fantastic boyfriend who saved me. If it wasn’t for the love and support I got from him and my family- I would never have made it through this.
I recently went to a support group up in Dublin- going completely natural! Walking around Ikea and Dundrum was so much easier because I didn’t need to worry if it was obvious I was wearing a wig- because I wasn’t wearing any! Hearing other Alopecian’s stories and talking to them has really helped me deal with my new look, without these wonderful new friends I’ve made- I wouldn’t be in the good place I am now.
I’m in school full time, wearing all sorts of head bands and wigs- making it quite obvious I don’t have hair because I’m trying to phase out the wig and show the world the beautiful new me! It’s exciting because some days I can be a brunet and other days I’m jet black! I also got a really cool Henna tattoo up my neck and around my head- which has helped me to feel beautiful again. I’ve almost accepted this- I’m still having good and bad days, but doesn’t everybody.
It takes everyone time to deal with it, but it is possible- I was so close to giving up- but this site just goes to show how you are not alone. This disease is not the end of our lives; it really is just the beginning- of our new one. Our new lives in our new beautiful skin.