Alopecia: Living with alopecia – ‘When my hair started falling out, I just didn’t want to acknowledge it. I had all the mirrors in my room covered with sheets’
‘I noticed my first bald patch when I was 21. I was in college at the time and, knowing what alopecia was, I panicked. I went straight to the doctor where I was diagnosed with alopecia areata, which is bald patches about the size of a euro coin.
cycle of hair loss and regrowth followed, which went on for the next seven years. Then, when I was 28, it got worse. The middle part of my head was completely bald and despite what friends and family were saying to me, I knew, I just knew, that I was going to lose it all.
I got a referral to a specialist who put me on steroids, and that was hell. Some people love being on steroids. It boosts their immune system and they feel great but, for me, it was horrendous. I wasn’t sleeping, I was having heart palpitations — I had every possible side effect listed and it cost me a fortune. Worse, I had no regrowth, so it was all for nothing.
My hair started falling out at an excessive rate a few years later. When I put my hands through my hair, clumps came out of it. The hair was falling around me when I was standing in the shower. I was afraid to wash it, brush it, or style it.
It was physically painful, too. When your hair is falling out at that rate, your scalp is sore to touch and really uncomfortable. Even water falling on it was painful.
I remember I just didn’t want to talk about it. I didn’t want to acknowledge it. I had all the mirrors in my room covered with blankets and sheets because I didn’t want to look at my reflection.
Growing up, I had always been told that my hair was my best asset and my best feature and never to cut it. Then, when I lost my hair, people said, ‘At least you have dark eyebrows and eyelashes’. Then I lost my brows and lashes… These were the things I associated my attractiveness with and it was like, what do I do now?
I bought a hair piece called a T-parting when my hair started falling out. I had a fringe cut into it and it clipped into the top of my head. But then it got to a point where I had to hairspray each hair in place and if it moved an inch you would see skull underneath.
I avoided buying a wig for as long as possible but I eventually spent €1,200 on one. Her name is ‘Willamina’ and I absolutely hate her. It’s 100pc real hair, and it’s exactly like my bio hair, but whenever I wore it I’d look in the mirror and get depressed because it reminded me too much of what I used to look like.
I think I wore Willamina about five times. Then it got to the stage where she’d be in my handbag but I’d wear a hat. She currently lives in the back of my wardrobe.
I was on holiday in Italy when I first decided to go out without the wig. I thought it would be easier doing it there than in Ireland. I went to a restaurant with my family and, to be fair, Italians love to stare at the best of times and all of a sudden there was a bald chick whose head was so much whiter than the rest of her body.
I remember being so paranoid but I kept saying to myself, ‘This is fine, I can do this, I can do this, I can do this’.
My job is in social care. No one at work batted an eyelid the first time I walked in bald. But I still don’t walk around my home town without anything on my head. The rare few times I have done it I have people staring or assuming I have cancer. Then there’s the older women who come over and say, ‘I’ll say a prayer for you’.
I’d be more likely to take my hat off if I’m out for a night in Dublin. It’s a city so you can blend into the background. Still, I’ve had some weird experiences with people being drunk. They seem to think it’s okay to touch you. You think someone is about to punch you and then it’s a hand stroking your head.
On what planet is it okay to touch anybody without consent, never mind my head? Then people think they’re being nice by saying, ‘Can I touch your head?’ No, I’d prefer you didn’t. That’s just weird.
Then, at gigs, you take your hat off, you’re getting into the music, and someone comes up and says, ‘My god, you’re so brave’. It’s like for the two seconds that I forgot I was bald, you’re just after reminding me. Can I just enjoy my night and not be this attraction?
I used to joke about the fetish world and say, ‘Maybe someone will have a fetish and be attracted to me?’ Now my eyes have been opened. That’s not a joke. There is a whole other side I was not prepared for so I’m very careful with the hashtags I use on Instagram and about putting myself out there on dating apps.
We live in a world of online dating and it’s ‘thank you, next!’. You’re first attracted to someone’s looks and then the rest of it grows. I’m not putting myself out there because I don’t want to be rejected. And then I think, ‘What kind of people am I going to attract?’, which relates back to the whole fetish thing.
You see all these girls online saying ‘bald is beautiful!’ They really own it, and they look stunning, but I will never be that girl. I just don’t get it. Yes, there are days when I embrace it, but there are also days when I don’t want to leave the house.
I tried lots of different things over the years to treat my alopecia. Biotin tablets, onion juice, castor oil, creams, gels and ointments… I spent a fortune and none of it worked. Nothing… until now.
I got referred to a dermatologist two years ago and, at the time, I still had hair. But between the Irish healthcare system and Covid, I waited two years for an appointment and, in the meantime, I lost all of my hair.
He prescribed medication that supports the autoimmune system and basically stops the body from attacking itself. That was two and a half months ago and there is definite hair growth everywhere and all my eyelashes are back.
At the time, I was adamant that dermatology couldn’t do anything for me, but if I had known what I know now two years ago, I would have paid to see a dermatologist privately.
It’s expensive medication and I’ve heard from people in other parts of the world that it’s not covered by their healthcare systems. I feel so privileged that I live in Ireland because the medication costs just under €1,000 a month but on the drugs payment scheme I don’t pay more than €114.
When you get diagnosed with alopecia, they tell you there is no cure and it’s caused by stress so you should try not to stress about it. But I honestly think doctors say it’s stress when they don’t know what the answer is. It’s easier to write it off that way.
Personally speaking, when I properly started to lose my hair two years ago, I was the calmest I’ve ever been. I’ve struggled with depression in the past and I’ve always had anxiety, but I was in a good place mentally. I had done a lot of work on myself and I had learned a lot of coping mechanisms so I was thinking, ‘Why now, when I’m genuinely in a space where I’m comfortable and contented, is this happening?’
It’s very common to develop anxiety and depression when you’re going through alopecia. I spoke to a woman on Instagram recently who was near suicidal and her marriage was heading for divorce. She was so consumed by it that her husband couldn’t deal with it any more. A 19-year-old guy I got chatting to online told me he couldn’t talk to his mates about his alopecia because lads don’t talk about those kind of things.
A lot of people say alopecia is harder for women than it is for men. But I don’t agree with that at all. Women, in general, are just better at talking about things, whereas guys tend to bottle everything up.
I chat to a lot of people with alopecia on Instagram, and the messages of support I’ve received have made me realise just how amazing people are. Okay, there are obviously still a*seholes in the world, but this experience has taught me that the majority of people are good people.
It’s the same offline. When I got my eyebrows tattooed I was expecting to pay €500, but at the end she gifted it to me. It turns out that this is what this woman does for people with alopecia and cancer.
My two-year ‘baldiversary’ is on August 25. When I originally planned to shave my head, I wanted to have all the girls around for a party, but that’s not how it happened. It was me on own at 4am, bawling my eyes out, and feeling very miserable.
This year I’m going to throw a party and celebrate it, because you have to remember the good times, as well as the bad.”
Marina is on Instagram @alopecia_minz
– As told to Katie Byrne