Arti
Age at interview: 22
Age at diagnosis: 22
Brief Outline: (Audio or text only clips) Arti developed alopecia areata 10 months ago. She had a small initial patch which turned into more rapid hair loss. Alopecia has had a huge emotional and social impact on Arti, though she is coping better now since using hair pieces and wigs.
Background: Arti is a 22 year old postgraduate student. Her ethnic background is British Indian.
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Arti developed alopecia areata about 10 months ago. Her doctors have repeatedly said that they think she developed alopecia because of stress; however, Arti disagrees and thinks that the alopecia produced stress, rather than being the other way round. Arti thinks that she is more predisposed to having alopecia because of some autoimmune health conditions in her family and because she herself has thyroid problems.
Arti initially thought that her first bald patch was a scar from a childhood injury. She thought it strange when the hair regrew but didn’t think too much of it. A few months later, she discovered other patches on different parts of her scalp. She went to her GP who diagnosed it as alopecia and told her that it would probably go away with time. However, Arti’s alopecia became more extensive and she rapidly lost a lot of her hair. She continued to go back to her GP, taking encouragement from online discussion forums that she should be persistent, before eventually being referred to a dermatologist. Arti was able to get an appointment more quickly because of her parents having private medical cover, but she still had to wait several weeks.
Arti has used prescribed steroid creams and been given steroid injections in two of her bald patches by her dermatologist. Whilst there seems to be some early signs of hair growth from the steroid injections, her hair has continued to fall out elsewhere on her scalp. Arti began to look into wigs by visiting a local shop and posting in an online forum for living with alopecia. She learnt a lot about wigs, including that a partial wig might be suitable because it would allow her to include her own hair. When this no longer covered her hair loss, she bought a synthetic full wig and she has recently been given a real hair wig from her parents which they bought whilst on holiday in India. The cost of wigs is a concern and Arti plans to get an NHS wig eventually; when she first looked into it, she found that the paperwork involved is long and would have caused a delay in getting a wig at the time when it mattered most to her.
Developing alopecia has been very stressful and confusing for Arti. She disliked the way she looked and would spend several hours re-arranging her hair so that others wouldn’t see the bald patches. She struggled with this a great deal and found social situations difficult to cope with. As a result, she wasn’t able to go to her lectures or seminars, which meant that she missed out on valuable opportunities for learning at university. Arti told only a few very close people, such as her parents and her boyfriend, about her alopecia but didn’t let anyone else know for several months. She began telling her friends when she felt more comfortable with wearing hair pieces. She also spoke to her university about the impact on her and was given some practical help with assignments as well as a referral to a welfare representative. Arti wishes that she had spoken to friends and her university earlier and she encourages other young people with alopecia to talk about it, even if they are reluctant at first. Arti thinks doctors and dermatologists should make sure to ask young people with alopecia about mental health and the emotional impacts.
Arti initially thought that her first bald patch was a scar from a childhood injury. She thought it strange when the hair regrew but didn’t think too much of it. A few months later, she discovered other patches on different parts of her scalp. She went to her GP who diagnosed it as alopecia and told her that it would probably go away with time. However, Arti’s alopecia became more extensive and she rapidly lost a lot of her hair. She continued to go back to her GP, taking encouragement from online discussion forums that she should be persistent, before eventually being referred to a dermatologist. Arti was able to get an appointment more quickly because of her parents having private medical cover, but she still had to wait several weeks.
Arti has used prescribed steroid creams and been given steroid injections in two of her bald patches by her dermatologist. Whilst there seems to be some early signs of hair growth from the steroid injections, her hair has continued to fall out elsewhere on her scalp. Arti began to look into wigs by visiting a local shop and posting in an online forum for living with alopecia. She learnt a lot about wigs, including that a partial wig might be suitable because it would allow her to include her own hair. When this no longer covered her hair loss, she bought a synthetic full wig and she has recently been given a real hair wig from her parents which they bought whilst on holiday in India. The cost of wigs is a concern and Arti plans to get an NHS wig eventually; when she first looked into it, she found that the paperwork involved is long and would have caused a delay in getting a wig at the time when it mattered most to her.
Developing alopecia has been very stressful and confusing for Arti. She disliked the way she looked and would spend several hours re-arranging her hair so that others wouldn’t see the bald patches. She struggled with this a great deal and found social situations difficult to cope with. As a result, she wasn’t able to go to her lectures or seminars, which meant that she missed out on valuable opportunities for learning at university. Arti told only a few very close people, such as her parents and her boyfriend, about her alopecia but didn’t let anyone else know for several months. She began telling her friends when she felt more comfortable with wearing hair pieces. She also spoke to her university about the impact on her and was given some practical help with assignments as well as a referral to a welfare representative. Arti wishes that she had spoken to friends and her university earlier and she encourages other young people with alopecia to talk about it, even if they are reluctant at first. Arti thinks doctors and dermatologists should make sure to ask young people with alopecia about mental health and the emotional impacts.
Arti thought she felt an old scar on her scalp at first.
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Arti thought she felt an old scar on her scalp at first.
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Arti’s hair has regrown in the past but she says it’s hard to tell whether that’s still happening.
Arti’s hair has regrown in the past but she says it’s hard to tell whether that’s still happening.
Arti did some online research about ‘hair loss’ before she went to her GP and was diagnosed, as well as after the appointment.
Arti did some online research about ‘hair loss’ before she went to her GP and was diagnosed, as well as after the appointment.
Yeah so then obviously when I went to the doctor and they told me it was alopecia, I did more research on that and there is quite a bit on the internet about it. There’s the alopecia charity, UK charity which they have a lot of information on their website.
Arti has a family history of autoimmune conditions.
Arti has a family history of autoimmune conditions.
Yeah. So they, yeah, my dermatologist sort of mentioned a lot of illnesses. The ones which stuck out which I actually had correlations with was rheumatoid arthritis. So I’ve had, people in my family have suffered from that and it’s apparently linked to that. And there was-. Also they believe that alopecia is an autoimmune disorder and my mum actually suffers from multiple sclerosis which is also an autoimmune disorder. So they also think that that might be linked, although people with multiple sclerosis don’t normally have children with multiple sclerosis, they often more likely develop different autoimmune disorders. So that’s something, I suppose. And there’s another one, oh type 1 diabetes. So I’ve had people in my family suffer from that as well. And they, they said that that makes it more likely so I’m not really sure exactly, like all the illnesses or anything, but that’s why my dermatologist said that I’m more likely to suffer from it cos I’ve quite a few people that suffer from those things.
Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.
Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.
Have any of the doctors done any like blood tests or anything like that?
Yep the doctors. Yes, when I told them about the achy joints and stuff – they ran some tests of like, I can’t remember, it was some tests to see if your muscles are inflamed or something. And all the, I think they ran about 4 or 5 tests and everything came back negative and they said, “It’s probably fine. It will probably go away”. I don’t do much exercise either which they said like, I did tell them I don’t do much exercise but they said like, “It might be like an exercise sort of like, might just pull something,” or whatever. But I don’t do much exercise. I didn’t do any exercise when it sort of came about and also thought I might have slept on it funny but sleeping on it funny – I mean I had, I’ve sometimes had the aches for like a week and a half, two weeks. It doesn’t feel like, it probably should have gone away if I just slept on it funny. So yeah it’s a bit odd.
Arti thinks changing her medication for an underactive thyroid might have been a factor for her alopecia.
Arti thinks changing her medication for an underactive thyroid might have been a factor for her alopecia.
Was the underactive thyroid diagnosed before you had alopecia? Yeah?
Yep. So it was diagnosed [hmm] I think like September 2013 or something, so quite a while back. Yeah, so it sort of took me sort of a year to sort of control it almost cos it was always like over-medicated or under-medicated. And so it took me a while to sort of get there which was when my sort of alopecia started coming about which was why I sort of asked the doctor about my medication, whether that was having an effect with the alopecia which is when they tried adjusting it.
Arti went back to her GP’s several times asking to see a specialist.
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Arti went back to her GP’s several times asking to see a specialist.
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I think I had about four, so quite a few. Some of them were quite spaced out and I think towards the end I had like two quite near to each other, like kind of, “I’ve had enough. Can you please refer me to someone who might know a bit more about it?” I didn’t even know it was a dermatologist that I had to see. I didn’t know, cos I didn’t realise it was even a skin condition. I thought there might be some sort of hair doctor. I don’t know [laughs]. So, yeah. I actually-, my parents have private medical for me so luckily I got referred quite quickly. So they referred me through that. But otherwise the GP did say I would have to wait like- I think the waiting list in where I was living was like 5 to 6 months. So it’s quite a long time. I think there’s not too many dermatologists around. And when they are, I think because it’s sort of triage systems so they see your need and they don’t see alopecia as a large need compared to other things. So yeah, I was glad that my parents did have private medical cos I could see someone quicker and it would’ve, it was nice to see someone quicker.
Arti says she’s been told as much about alopecia as is currently known.
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Arti says she’s been told as much about alopecia as is currently known.
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Arti’s GP referred her to a counsellor. She says it helped to talk to someone who doesn’t know her.
Arti’s GP referred her to a counsellor. She says it helped to talk to someone who doesn’t know her.
Only when I started bringing it up. So I brought it up with my GP because when I told my university about it, they need evidence. So I went to my GP to get evidence for the fact that I was having social anxiety and then they sort of talked to me more about it and asked me what I was going through and allowed me to talk about it and actually my GP also referred me to a counselling service so I could talk more with someone else as well who’s more experienced in sort of helping you talk about it [laugh]. So yeah. So I mentioned to the doctor but they were helpful when I sort of mentioned it to them. The counsellor was very good. I actually didn’t have that many sessions but they were good for the sessions I did have [laugh]. And it was nice to sort of talk to more people about it, another person about it, get a different perspective. And having someone who doesn’t know me really helps because I feel like I can be more open in talking to them. I feel like, I like to be sort of a stronger person almost in the sense that like around my family and stuff, I don’t like to show weakness. I don’t know why, it’s just something I’ve, I’m just like. But because that I don’t, I wouldn’t like show my very emotional side to them. So I didn’t-, I feel like I was a sort of putting up a shield and I couldn’t really talk about it properly, even though I was talking about it with them, I couldn’t talk about it properly with anyone. So the counsellor was sort of very helpful.
Arti describes having steroid injections and what it was like afterwards.
Arti describes having steroid injections and what it was like afterwards.
Arti’s read online about home remedies for alopecia, but would like to try the conventional medical options first.
Arti’s read online about home remedies for alopecia, but would like to try the conventional medical options first.
The only thing which I’ve turned down-, I suppose I wasn’t directly offered them but like, are sort of home remedies. I’d rather try the medical stuff first and if I sort of don’t get a success with that then I might turn to home remedies but yeah, my mum found out quite a lot of home remedies for me [laugh]. And told me about all the stuff with ginger and rubbing things on your head. And I’d probably be up for trying it if nothing else worked but at the moment like I would rather just stick to, you know, hopefully well-researched medical knowledge. So yeah, yeah, so I’ve not directly turned things down but that’s something which I’m not willing to try at the moment.
Arti finds it easier to talk to people about her alopecia now that she wears a wig.
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Arti finds it easier to talk to people about her alopecia now that she wears a wig.
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I probably should have talked to more people about it I think in hindsight because- I don’t know what my fear was about telling people, about letting people know, like close friends and things, but I didn’t tell them. And I tried to sort of hide it from them which is why I sort of saw them less and-. I think if I had told them then they probably would have been really supportive.
I’ve told quite a few more people now. I think it was after I started wearing full wigs or was wearing my partial wig that I started letting people know. I think maybe that I was hiding under something which made me feel more comfortable sort of talking about it which is again quite strange cos, I don’t know. It’s strange that hiding behind it can give you more confidence [laugh]. But yeah I’ve told quite a few more people. Some, some of my closer friends now and there are more people who know. And actually when I told them, they were more shocked than anything else. They hadn’t realised what was happening at all. And they hadn’t heard anything about the condition and sort of asking questions and just quite interested and, yeah, a bit sorry that I hadn’t told them earlier [laugh] cos they would have liked to know and could have helped me a bit more.
Worrying about her hair was a big preoccupation for Arti when she was studying and meant sometimes missing lectures and seminars.
Worrying about her hair was a big preoccupation for Arti when she was studying and meant sometimes missing lectures and seminars.
Arti talks about washing and freshening up her synthetic wig.
Arti talks about washing and freshening up her synthetic wig.
Social anxiety made going out in the evening difficult for Arti.
Social anxiety made going out in the evening difficult for Arti.
At first, Arti’s dermatologist did not refer her for an NHS hair wig because her hair loss wasn’t severe enough. A wig she bought herself cost £100-£200.
At first, Arti’s dermatologist did not refer her for an NHS hair wig because her hair loss wasn’t severe enough. A wig she bought herself cost £100-£200.
But it was quite annoying when, when I first started moving to wigs that it wasn’t covered by the NHS because, yeah, it’s quite-, wigs are very large purchases which I didn’t realise at all but they are like quite a lot. I don’t know how much the cheapest ones are but I’ve sort of paid like between £100 and £200 which is a lot for me [laugh].
Arti used the Alopecia UK website and posted on their forum to get advice about wigs.
Arti used the Alopecia UK website and posted on their forum to get advice about wigs.
Arti feels her doctors haven’t always listened or taken her concerns seriously.
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Arti feels her doctors haven’t always listened or taken her concerns seriously.
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Hm.
So yeah, listen to the person.