Meghan

Age at interview: 20

Age at diagnosis: 10

Brief Outline: Meghan was diagnosed with alopecia at age 10. Her hair loss happened whilst she was starting secondary school and she experienced a lot of bullying. She is now studying at university and considering trying topical immunotherapy treatment for her alopecia.

Background: Meghan is 20 years old. She is single and an undergraduate university student living in shared accommodation. Her ethnic background is White English.

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Meghan was diagnosed with alopecia areata when she was aged 10. A pattern of bald patches in her hair were noticed when she was having her hair cut at her childminder’s house. Her hair loss was fast and she lost a lot of hair over the next two months. This was an incredibly upsetting time for Meghan and she can remember waking up with clumps of fallen out hair in her bed. She found it very hard to adjust to alopecia at the same time that she was undergoing painful and stressful treatments. Bullying at school in addition to the treatments and their side effects, such as migraines, meant that Meghan missed out on a lot of school. Her hair loss impacted at a difficult time when she was moving from primary to secondary school and she lost some friends who were unkind about her alopecia.

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.

And can you tell me a bit about that what it was like when you were having the 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.

I think ‘cos the stereotype of women having like the typical one is like long hair, like full head of hair, like whereas men it is more acceptable to be bald ‘cos of like male pattern baldness and like old age and stuff.  But with women, I think it’s a lot, lot harder ‘cos that stereotype. But if you see, I see people down the street who have chosen to shave their head and that’s cool, but then because I haven’t chosen to shave my head and it’s not like stubbly that’s not OK. Like that’s what I don’t understand like all this fashion is coming in of people taking off half the head or models with like with shaved head, but because they have that tiny like not even inch like tiny, tiny bit of a stubble, that’s more acceptable and that’s, that does wind me up. 

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.

When I went to the doctor’s last year they said there’s a, a newish age treatment called topical immunotherapy where they rub like a harsh chemical on your- on the patches and it induces like an eczema type reaction and your body fights that and I’ve heard the success rates are quite good which is what I’m in the process now of finding the hospitals that do it and that’s why I’m getting referred from the GP. But it’s-, I’m two months in now waiting to see if they’ll do it where I live or if I have to travel and if they’ll fund me and things like that, so it’s quite a long process trying to find out what hospitals do this treatment. But that’s the last thing that I have left ‘cos there was one treatment the reason when we stopped treatment, they wanted to move me onto- I don’t even know what’s called but they made, they, they make you take this, this pill which made your skin more sensitive to UV light and your eyes and stuff so you have to wear like sun glasses and then you sit in a almost like a giant circular sunbed with the patches on show. But I at that point that was when me and my mum just like totally drew the line, like needles were enough like, like that was the stabbing enough and then moving on to something as big as that where I’d have to stay in hospital once a week I thought that was just 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.

The first dermatology, the dermatology doctor I had, she was amazing like the, the and there was a sister in the ward, who did all my treatment for me. They were absolutely amazing. And I think because they were female they could kind of empathise and like sympathise of what you’re going through. 

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.

At the beginning of secondary school, obviously that was very, very difficult ‘cos it’s, you’re in an awful situation anyway. Bullying is rife and people like new making new friends and stuff that was awful. And then as it got better and like I got more comfortable in school it was a lot easier. And then from being in sixth form to now, so the last 3, 4 years that’s been just so much easier ‘cos I am- I’m adult enough now to accept that it is, that is my life and it’s not and people like people my age now they don’t bully, like that’s not a thing like so I think I’m glad to have grown up and be OK with it now.

Meghan wore a bandana to cover patches of hair loss.

And you mentioned before about sort of covering patches with different hair styles, could you tell me a bit about that? 

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”.

Say if it’s like eight o’clock at night, should we go out for a drink? And there’s the whole getting, we’re getting ready thing. And when I want to go out like say we’ll go out drinking or to a pub or on a date or something, I have my extensions in because I feel more comfortable and I don’t have to worry about like moving too fast or someone like seeing it on a night out when they’re drunk and saying something. So it does take a lot, it does take a fair bit for me to go outside, like some days I just don’t feel OK like with being outside like in whether it’s the weather or what I’m doing or like if something has gone right. If my hair hasn’t gone right then I just, I can’t, I just can’t do it. 

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.

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. 

Meghan thinks it is hard having a relationship at the same time as feeling anxious about hair loss. She says allowing someone to love you is difficult when you “can’t love yourself”.

I know it wasn’t directly because of the alopecia, but the emotional- like the way it affects you emotionally, that’s hard as well ‘cos you I feel like constant-, the people constantly looking at me or people constantly know and I just get like paranoid about it and I get really like bad anxiety from it and then trying to get put that in a relationship scenario it obviously doesn’t work so you have to get have to deal with that on top as well.

The emotional state that it does leave you in trying to deal with other people who haven’t been there from the start and explaining to new people that is quite hard. So, I mean, I’m, I get quite anxious about it and paranoid, so putting that in a situation where you’re trying to making someone like, trying to let someone love you is difficult when you can’t love yourself and that, that’s what I’ve learned the hard way.

Meghan had a bad experience with a dermatologist who asked her to remove her hair extensions to look at her scalp, but didn’t give her time to put them back in.

Don’t be like that doctor like, yeah, don’t-, always, always make them feel comfortable. Like it’s an embarrassing situation having to show your hair when you have to and if you just do it in the nicest way possible and I think when, when the first thing you do when you walk into that doctors think is, “All right, ok, can you show me this blah-de-blah?” I think it would be nice to be treated more like a person then, than someone just coming to get like treatment, ‘cos it’s more of an emotional thing than anything else like you wouldn’t walk into someone say, with cancer and you wouldn’t be like, “Right, ok, blah-de-blah,” straight in. You would get to know them, you would like talk to them and reassure them, but there’s no sense of that with, with alopecia.