Some young people were happy with the help they received from GPs and dermatologists, but many had advice they wanted to share with medical professionals treating young people with alopecia. Key messages were:
- be aware of the emotional and social impacts alopecia can have, including that seeing doctors can add to distress
Many of those affected felt that alopecia wasn’t always taken seriously by medical professionals, even though it can have a big emotional impact. As Elizabeth explained, it’s not just the visible hair loss but also the “invisible stuff” of the emotional and social effects. Many people talked about the way alopecia had affected their confidence and self-esteem as well as experiences of bullying. Often, they didn’t feel their doctors really understood this. Some talked about times when seeing a doctor about alopecia had actually caused more upset and made them feel worse by making comments or ushering them out of the appointment too quickly.
Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.
Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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All I remember is that it was a man and he, both my parents were there, and he said, “It will probably take-”, he said, “It’s alopecia areata which means that patch will probably take a year to sort out”, but what he didn't know was that it was going to be more than one patch and carry on. So, yeah, he kind of gave me false hope, because I remember I was like counting down the months until the year was over and then it just carried on after and after and after a while I stopped counting. Which is another thing I want to say, because I put a timeframe on it – and that was really-, that was really frustrating because I was kind of wishing the days away, but you kind of have to, what I’ve learnt now is that you can’t ever, you don’t ever know when it’s going to stop or start again. So you have to just let it, let it happen and just be patient with it and sort of don’t let it stop you, because for a while I was like, ‘I’m not going to do this, I’m not going to go out, I’m not going to go to parties, I’m not going to buy these clothes, I’m not going to wear these clothes until my hair is back’ and you can’t do that because if that happens for the rest of your life, then you are always waiting to live.
Arti feels her doctors haven’t always listened or taken her concerns seriously.
Arti feels her doctors haven’t always listened or taken her concerns seriously.
Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I’d probably say listen to the person who’s talking about it a lot more. Because, yeah, as I said before, I feel like they don’t really listen to you sometimes. And what I found quite a bit with my GP is that they thought that just because I’m young, I’m healthy generally that, you know, I will kind of be that way, I won’t really have any problems. But then, you know, you can still have problems if you’re young [laugh]. And so I feel like GPs like to disregard a lot of things quickly and, yeah, I would tell doctors to sort of take young people more seriously in what they are saying about their health cos I think a lot of the young people don’t really like going to the doctors, I know I don’t. So even going to the doctors is a big step. It means that something is actually wrong with you.
Hm.
So yeah, listen to the person.
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.
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.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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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.
- give young people time in appointments to make sense of their diagnosis of alopecia and ask questions about it
Be aware that people may have waited a long time for the first appointment about hair loss and could be frightened about what their symptoms mean. Krista thinks it’s important people with alopecia areata are given more time in appointments to think and talk about the condition. Her advice to doctors is “don’t just turn them away from your office and say ‘it might get better, it might get worse’”.
Krista had a long wait before she saw a dermatologist. She was told that all the information she needed was online and she left the appointment feeling let down.
Krista had a long wait before she saw a dermatologist. She was told that all the information she needed was online and she left the appointment feeling let down.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I went a few times before I got referred and if they can see that somebody’s hair is getting worse just refer them because I still think now like I said earlier, if I had been referred back in March I don’t think it would have got the way it did because the treatment worked for me. And I think a lot of the hair loss as well cos I would put it down to stress and sort of the hormones but. When I found out I had alopecia, I stressed even more which I noticed even more hair fell. So I do think if I was referred earlier it would have, it wouldn’t have got to the stage it got to. And especially the dermatologist, not to say thing like, “Have you searched on Google? Then you’ll already know the facts”, don’t give people-. You-, I’d have preferred if he told me rather, cos I think sometimes you can all Google and you scare yourself cos it’s always horror stories so if he’d have maybe just spent an extra five minutes with me explaining why, why I don’t, even now I don’t even know why it happens all I know it can be an autoimmune disorder, just explaining more about it I think, I’d probably say, that’s all I’d say. Just because we’re not ill just because we’ve got no threat to our lives I think we still need as much time as anybody else cos of the mental effects it has on you. Even now I don’t think I’ll ever, mentally I don’t think I’ll ever be that same person I was before, ever, because this happened.
Rosie says it’s important people who think they might have alopecia don’t have to wait too long to see doctors.
Rosie says it’s important people who think they might have alopecia don’t have to wait too long to see doctors.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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The only advice that I could probably give for just generally treating anyone with alopecia, not necessarily young people, but also older people as well is just to have the process sped up a bit more. Because I sort of like had my first GP appointment at the very beginning, but had nearly a month in between before I had my dermatology appointment at the hospital. And obviously at that point I’d lost nearly all of my hair. And I think if somebody hadn’t had the open minded approach that I’d had, I think they’d find that absolutely devastating and they wouldn’t know what to do. They’d probably jump straight at the local wig shop and then get would something that, probably wouldn’t suit them or you know, would have them seriously out of pocket. So I think that would be the only advice really that I would have, is just to have the process sped up a bit more.
- provide information about alopecia to those who want it
Young people wanted different types and amounts of information. The main things people wanted to know were about alopecia causes and triggers, treatment options and what the future might hold. Hearing that there are no certain answers can be difficult. Beth found that her dermatologists explained things well, but it could still be a lot to take in. Some people talked about wanting more input with treatment decisions, but others felt they had been left with all the responsibility to look into options. Many people wanted their doctors to give them information about side effects and risks of treatments as well as being realistic about the chances of success. Becky feels she and her mum had to do this for themselves after treatment options were listed without detail. Many people wanted information about wigs, including how NHS entitlement processes works. Laurel feels the option of wigs should have been raised with her sooner.
Emma says she wanted an explanation of alopecia causes, but doesn’t like when doctors insist that stress is a trigger.
Emma says she wanted an explanation of alopecia causes, but doesn’t like when doctors insist that stress is a trigger.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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A big thing I think is not just saying, “It’s stress.” I think it’s quite patronising for somebody to say it-, you know, it, stress has triggered it. Because I would say that I’m really not a stressful person and I, everyone will just say I’m really laid back. And I’ve never had any triggers that I can ever think of to have caused it. And I think it’s just kind of like a go-to answer for why has it happened, “Oh, it’s stress.” Cos it’s not. You’ve obviously, it obviously, with having eczema I’ve obviously got a bit of a history with autoimmune. So it’s obviously come hand-in-hand with that. And unfortunately it has just ‘oh, well, I’ll just get rid, you know, attack your hair cells’. But I think maybe I’d probably just like to have somebody to have sat down and maybe just explained. But I think it’s just cos it’s how I am as a person. I’d rather know about the ins and outs as to what has caused it and, you know, be like the scientific reason behind it, just so I could have a better understanding.
Rochelle felt she was given no further help after being diagnosed with alopecia. She would have liked more information from her doctors.
Rochelle felt she was given no further help after being diagnosed with alopecia. She would have liked more information from her doctors.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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They could have been more caring, not just “Oh okay, it’s alopecia.” More caring, especially at that age of 14 and losing your hair, you’re gonna feel very-, you’re gonna be very upset, like I was distraught [laughs]. So they need to be more caring. Give more information, more research, not just to the person who's suffering with alopecia but also their, the person they’re with – so they could have given my mum something to maybe help with me suffering with this or even normal recommendations.
- offer emotional support as well as medical treatment options
Emma thinks it’s important doctors discuss different types of psychological support and avoid “jumping to offering somebody antidepressants for when you’re feeling low”. She suggests counselling as one option as well as signposting to alopecia support groups. It was helpful for many people to find out from their doctors that there are support groups online and meetings all over the country where they could talk to others with alopecia. However, some people cautioned that online information and support isn’t a replacement for what doctors can or should offer.
Ben would like doctors to think not only about treatments but also the emotional side of alopecia, including uncertainty and confusion about the condition.
Ben would like doctors to think not only about treatments but also the emotional side of alopecia, including uncertainty and confusion about the condition.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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To be honest the doctors were nice. No one was ever rude but I think maybe more understanding I guess. I don’t know. So I think they just because they’re very medical kind of people they kinda see everything black and white and they’re like, “You have a problem, try that, see if it works,” type of thing. I think it’s a lot more-, I think it’s more of an emotional problem than more of a medical problem. I think they, they need to acknowledge that I guess because they are very like – you ask them questions, they say, “I don’t know.” And that’s fair enough if that’s the answer but [laughs] it’s not-, it’s quite abrupt. It’s quite hard hearing that.
Hannah thinks doctors should consider emotional support for alopecia more, but that they also need to be aware of stigma associated with this.
Hannah thinks doctors should consider emotional support for alopecia more, but that they also need to be aware of stigma associated with this.
Age at interview: 21
Sex: Female
Age at diagnosis: 16
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It’s gotta kind of be an assessment of what you think you can offer and if not what you can maybe suggest to a person so like if someone’s really struggling you can maybe say ‘oh well maybe, like looking down the mental health route would be okay’. But then you’ve got to I think be very careful of how you put that across, because obviously people still have those old kind of views about mental health and stuff. So that can then scare a person or that can put a person off. And yeah, but then with information just from anything, whether it’s mental health to wigs or to treatment or even just like sites like an online site where you can see that people actually deal, like deal with it and have it and stuff, so.
Could you say a bit more about sort of conceptions people might have about mental health support and you said that it might be off putting for somebody?
Yeah, like I know that when I first kind of got offered support for my mental health issues, I had totally different ideas of what it’d actually be. And although like that is changing in society, still people get scared of-, because people are naturally scared of the unknown so, if, also, if-. It’s a grieving process as well, so if you’ve maybe not accepted it, you could just be like ‘no, no, no, I’m fine. I don’t need that help’. And then actually they might be thinking ‘well, I wish I’d of taken that help’ and then they might feel like they can’t go back to the dermatologist and then say ‘well I’m actually struggling now’ or y’know. It took me a while to actually cry over the fact that I’d lost my hair, cos I wouldn’t let myself cry over it. And it literally took a good year or so until I actually let my emotions kind of affect me in the right way that they should be. So yeah, it depends on how a person’s dealing with it and how they will take a certain suggestion or anything.
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