Alopecia took more than our hair away
alopecia sufferers bernadette and Sinead tell caroline crawford of the trauma and depression that followed the loss of their crowning glory . . .
TURNING around in the airport queue, Bernadette McCarthy knew that once again she would be met by a sea of staring faces. "I don't mind that people were staring, I do it myself, but it was the looks of sheer pity. I just want to shout 'Don't feel sorry for me, I'm healthy I just have no hair'."
Bernadette (37) from Blanchardstown suffers from alopecia universalis causing her to lose all the hair on her body.
"I was just 27 and I lost all the hair on my head in eight months. It's the usual story, my hairdresser spotted it first. It was just a small patch but within a few months it was pretty much gone," she recalls.
The young mum was left reeling, her confidence evaporated and she couldn't bring herself to go out in public. Nine years on she still has difficulty explaining how deeply the loss affected her. "It's everything. It's your femininity."
Bernadette struggled through feelings of grief at the loss of her hair, followed by guilt for caring so deeply while others battled deadly diseases like cancer.
"People tried to help but if one more person said to me 'it's only hair' I would have screamed."
An appointment with a dermatologist left any hopes of recovery dashed.
"I was thinking I'd go in and they'd say 'Here's how we'll fix this' but I came out crushed. He just told me to get a good wig maker because the depression will last longer than any hair that might regrow."
And the depression did hit, leaving Bernadette a recluse in her own home.
The once outgoing girl refused to go out, stopped going to the gym and began putting on weight.
"I can't explain the depression you feel. I wasn't going out and I didn't want to be seen.
I had been so outgoing, always chatting to everyone and joking around.
"After I'd find myself going into bars and scanning the room for a corner that I could sit in that I wouldn't be seen," she added.
The onset of alopecia also had an effect on her 10-year-old daughter Nicole.
"My own daughter didn't have sleepovers, I couldn't wear the wig all day and when I came home in the evenings I'd take it off.
"I didn't want her friends seeing me and thinking there was something funny about her. If somebody was coming over I'd watch TV in the bedroom," she says.
"Nicole would constantly check her own hair. She would ask me to look and see if she was losing it.
"I would be watching her all the time," adds Bernadette.
Bernadette was a single woman in her 20s when she developed alopecia universalis and feared she'd never date again.
"There was such a stigma attached to it in my own head. I just thought 'Who in God's name would want to go out with someone like this?' And I was always afraid of how I would bring it up."
When she eventually began dating, she couldn't shake the fear that they would run a mile when they discovered her condition.
"I eventually told him I had it and then for good measure I whipped off my wig.
"I didn't get the reaction I thought I was going to get.
"It's a cliché but beauty is in the eye of the beholder," she recalls.
While they are no longer together, the experience taught Bernadette that finding love wasn't off the cards.
"I realised I'm just the same as any other girl. Now I don't wear my wig at all.
"It might be a control thing for me but I just want everything up front from the start and whatever happens, happens."
It's a feeling that is shared by other alopecia sufferers, such as Sinead Cox (33) who began losing her hair last year.
Despite a course of painful steroid injections directly into the scalp, her hair did not return and she must now rely on wigs she buys from the US.
"I never thought for half a second that I would lose my hair.
"It's not something I could ever prepare myself for," she admits.
Sinead speaks of how she had loved her hair, loved experimenting with it, cutting and dying it. The loss of it was like a physical blow.
"It's still a blow. I'm single and I wonder will I ever meet somebody that will accept this," she says.
The low point hit when she first went out in public wearing a head scarf.
"People were staring and I thought the first thing they'll think is that girl has cancer. That was a breakdown moment, it was probably the toughest moment," she recalls.
Now she has found a great website for realistic and affordable wigs in the US (voguewigs.com) and is beginning to get her confidence back.
"They cost about $60 (€45) and with the postage it's still only $100 (€76), which is brilliant.
"It's very natural looking and people are not able to tell. I bring them to my hairdresser and have them cut to suit my face," she explains.
The young woman was also afraid of the impact the condition would have on her friendships, especially her male friends, but found that far from avoiding the matter they have been fantastic.
"My friends have been brilliant.
"I thought maybe some of my male friends would shy away from the issue and not ask me about it but they've been great. They ask me is there any hair going on under there and they try on my wigs.
"It's the elephant in the room and it's giant and it's pink. You have to talk about it," she adds. A support group for alopecia sufferers meets in Dublin at the Red Cow Moran Hotel on February 16 at 7.30pm
For more information on Alopecia Ireland contact www.alopeciaireland.ie