Meghan
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Meghan has tried different treatments in the past for her alopecia, including steroid creams and injections into the skin on her head. The injections made her scalp bleed and were incredibly painful. Meghan and her mum agreed to stop the treatment when the suggestion was made to move on to photherapy (light therapy) because it was too upsetting and the hair did not seem to be growing back. Meghan has had a mixed experience with dermatology appointments so far. The first consultant she saw while she was living at home was very understanding. In stark contrast, she once saw a second dermatologist at a different hospital and this was “one of the worst days” of her life. At this appointment, the dermatologist ushered her out of the room without giving her time to put her hair extensions back in and get ready to leave. Meghan has recently looked into other treatments and would like to try topical immunotherapy; however, not all hospitals offer it and she is hoping to be transferred as a patient to another nearby hospital for treatment.
Alopecia has a massive impact on Meghan’s life, particularly in terms of school, friendships and confidence. Meghan found school very hard as she was bullied by her peers. Some of the other children called her names and spread rumours such as that she had cancer and that her condition was contagious. Her school tried to help but were limited in what they could do as she felt that “the whole school was laughing at” her. For many years, she didn’t have many friends and felt unable to do ‘normal’ things. Meghan thinks that alopecia and the negative impact on her self-esteem played a part in her developing depression and she says that it’s important for medical professionals to understand the emotional side of alopecia. Things started to improve in college for Meghan and this has continued at university. Although she finds relationships difficult to maintain because she sometimes lacks confidence, Meghan has a good friendship circle of people who are accepting and understanding. She thinks that people her age have now matured more and that the clique-ness of school has gone.
Meghan spends a lot of time getting ready so that she feels “OK with going outside” including by styling her hair to hide bald patches. She began experimenting with brightly coloured hair dyes and make-up in secondary school when her hair first started growing back. She also used make-up to fill in part of her eyebrow when the hairs began to fall out. Meghan has been asked recently whether she has an ‘undercut’ as this is a fashion trend in hair styles and she sometimes goes along with it if she doesn’t want to explain about alopecia. She worries about what her future may hold with alopecia and tries not to think about the possibility of a wig too much as she finds it a scary thought.
Meghan knows that stress can trigger her alopecia. She tries to cope as best as she can but finds there are many stressful events, such as exams, that she cannot avoid. She has a very close support network of her parents and closest friends. They have always stood by her, giving practical and emotional support, and she says that she “can’t praise them highly enough”. Meghan did not feel ready to talk to anyone about her hair loss when she was first diagnosed 10 years ago but now feels more able to. She finds that most people do not know what alopecia is and sometimes has to briefly explain about hair loss.
Meghan describes her experience of hair regrowth.
Meghan describes her experience of hair regrowth.
It was a slow, slow process. But I’ve originally I had a line from the front to the back, all gone in the middle and down the sides. And that middle bit was the first bit that ever grew back and it was growing back up like this so I was getting more remarks at school like saying that, I don’t know, I looked like I had a Mohawk or like chicken, like a chicken fluff, whatever. That I was happy to have it back, but I was willing for it to grow faster and after that the sides I, because I was hiding it from myself I didn’t like to look at myself in the mirror I never really knew when it grow back, grew back but it did. And then it fell out again 2013 and started growing back 2014 and that’s been a really slow, I’ve got that much in a year down the sides here. And it’s a slow process, but I count my blessings that they are there.
Even though Meghan says partially-shaved hair is in fashion at the moment, she feels the bald parts of her scalp (with no stubble) wouldn’t be seen by others as acceptable.
Even though Meghan says partially-shaved hair is in fashion at the moment, she feels the bald parts of her scalp (with no stubble) wouldn’t be seen by others as acceptable.
But I have the where I’ve got mine is exactly where people shave off, but I can’t shave mine because people think it’s weird.
Meghan went back to her doctors recently after hearing about topical immunotherapy treatment. She had previously stopped trying treatments after deciding with her mum that light therapy after steroid injections would be too much.
Meghan went back to her doctors recently after hearing about topical immunotherapy treatment. She had previously stopped trying treatments after deciding with her mum that light therapy after steroid injections would be too much.
Meghan compares the dermatology staff she had growing up with a dermatologist she saw last year at the first appointment on her own.
Meghan compares the dermatology staff she had growing up with a dermatologist she saw last year at the first appointment on her own.
So like first off, yeah, that was, they were really like, yeah, they were really like supportive it was a friendly face to see every week. But then when I went back last year to a completely different hospital, I felt like he’d, he just didn’t understand anything. I felt like I was like teaching him about my illness because I’d been through it so long and like I said, it was back when I was wearing extensions and he made me just take them all out, straight, straight out. And then he was like I only went to get the cream originally and he was like, “Right, you’re-, I think you need to have injections, I’ll give you the cream as well”. So he pressured me into having injections and then just left me with a nurse in the like- when he was done with it, he was like, “Right, OK you can leave now”, with my extensions in my hair like my hair all up in pain, like scarred at what’s just happened, completely by myself. Luckily the nurse who was female was there and she kind of understood like how I, I couldn’t go outside looking like that and she let me into their staff room and she let me like do my hair again and like she gave me time to go outside again like by myself, that was awful. And they’re my two dermatology doctors I’ve seen, so one was amazing and one was awful.
For Meghan, who is 20, being older has made a big difference.
For Meghan, who is 20, being older has made a big difference.
Meghan wore a bandana to cover patches of hair loss.
Meghan wore a bandana to cover patches of hair loss.
Yeah because mine was on the side and the back I always had my hair down and then depending on where the patches were I’d just change my side parting but now I probably have about this much hair along the front here.
So that’s why I have a bandana to keep everything in place. But yeah, I’m I know, my one of my mum’s friends has a tiny like five pee patch of alopecia all she does is just keep her hair tied up all day.
It is just finding what, what hides it best for you and that’s manageable every day. Like for me all I have to do is brush my hair, straighten it and put it in a bandana and that’s so much easier than going through wearing like eight pieces of extensions which pull on your hair, then having to style it every day like that’s, that’s what I used to do. But now I’m. I’m totally comfortable just wearing something like a bandana or a head scarf.
For Meghan, going out can feel like “a personal battle” and she sometimes feels she can’t go out because of the weather or her hair not being “right”.
For Meghan, going out can feel like “a personal battle” and she sometimes feels she can’t go out because of the weather or her hair not being “right”.
But that’s just something that I, it’s a personal battle that I have to get over. But with, to do with friends though I’ll always go and see my friends like in a closed environment, but when it’s when we’re outside in public that’s when I do start to get quite worried, like it does take me a lot, a lot of time to get ready.
Yeah.
To be OK with leaving.
The best support for Meghan is when other people, including her family, behave ‘naturally’ around her.
The best support for Meghan is when other people, including her family, behave ‘naturally’ around her.
If there’s something that’s bothering me about it or if I said I’m getting ready for a night out with like my friends, they’ll just like oh let me just fix that bit of hair or something small. It’s nothing like it’s there’s no like a major like sit down cry or anything like that. At the beginning obviously there was and my, occasionally me and my mum do. But it’s more just like it’s just something like say if you had like a bit of dirt on your face they’d be like just get rid of it, it’s just something like as natural as that now, which is what definitely helps. Something that’s not like forced or should I tell her that, that her bald patch is out or something like that. It’s just like something as simple as day to day life and that’s I think is the biggest support you could have is just natural now, ‘cos it like at the moment it feels like I’m going to have it forever, like I’ve had it for half of my life so if for me it feels natural and then when people around me and it feels natural for them it makes me feel a lot more secure and like normal about it.