Georgia

Age at interview: 20

Age at diagnosis: 4

Brief Outline:

Georgia first had eczema as a child. Her eczema then cleared for several years before returning again when she was 14. She has tried many different creams, including steroids, and she now does a lot of research to learn about managing and treating eczema.

Background:

Georgia is 20 years old and works part time as an administrative assistant. Her ethnicity is White British.

More about me...

Georgia was first diagnosed with eczema when she was 3 years old. Her parents would wake up to find she was covered in blood from scratching so much in the night. She developed a skin infection and was hospitalised for several weeks as a young child. When she came home, her dad took over her care as her mum found it too upsetting to see Georgia in so much pain and confusion. Georgia remembers that she was not allowed to do many of the activities that the other young children could, such as play outside in the sun because she would become itchy and scratch when excited. The other children would sometimes stare and point at her, especially when her eczema was quite severe on her legs, arms and face.

Georgia’s eczema then cleared for about 4 years whilst she was in secondary school and during this time she mostly forgot what it had been like to live with eczema. However, aged 14, she began noticing that something was different about the skin above her upper lip. She thought it might be a cold sore at first but eventually went to see her GP who told her that it was eczema and gave her steroids and moisturisers to use. Since her early teenage years, Georgia’s eczema has returned all over her body quite severely. She does not feel that the doctors she saw then took her very seriously as they tended to prescribe her similar treatments with little success. By chance, a doctor she saw in a family planning clinic picked up on her eczema and promptly referred her to a dermatologist. This was “the biggest turnaround point” for Georgia. The dermatologist reassured Georgia that she would help get her eczema under control and outline a list of options to explore over the next 18 months. She has since tried lots of different moisturisers, steroids and is currently on a course of UV light therapy. 

Eczema has a huge impact on Georgia’s life; it is painful and time-consuming to treat and affects her confidence dramatically, with knock-on effects for her social life, romantic relationship and studies. She is also aware the eczema can affect employment. For example, Georgia had a part-time retail job whilst in college and preferred to be in the stock rooms as she found it hard physically and emotionally interacting with customers on the shop floor when her eczema flared up. Both her previous and current employers have been very understanding, allowing Georgia to go for dermatology appointments and light therapy treatment as well as providing things like hand soap at work which is suitable for her skin.

Having eczema and the impact of this on her confidence means that Georgia misses out of many of the things her female peers are doing such as using make-up, dyeing her hair, wearing jewellery and going out. This is made harder by the fact that stress is a key trigger for Georgia’s eczema. She describes it as a “vicious cycle”: her eczema makes her upset about the way she looks which triggers her eczema further. She says that she is prone to stress and sometimes finds that even an argument with someone can prompt her skin to become red and itchy. Travelling abroad has been a concern for Georgia in case her suitcase gets lost with all her creams inside or that she might not be allowed to take her medications into another country. She would like to travel around the world, especially to countries around the equator, but worries that the hot climate may aggravate her skin.

Georgia’s dad, boyfriend and friendship group have all had prominent roles in the practical and emotional support around eczema for her. As she got older, Georgia’s parents stepped back and gave her more independence with treating her eczema. Georgia says that her boyfriend has been very supportive and understanding of how upsetting eczema is for her. Her boyfriend tries to reassure her and encourages her “to try new things and to go out and be the person who I should be”. However, she finds it difficult to cope with the impact on her self-esteem and struggles with confidence and physical intimacy. Georgia worries about what other people might think about her eczema and scratching. She is very conscious about leaving dry skin if she touches/hugs someone. Georgia also has to plan ahead and make sure she has her creams with her everywhere she goes. She leaves creams in different coats, bags and throughout her own house and friends’ houses so that she can access them easily at any point. 

Researching treatment has been one key way that Georgia has tried to take some control over eczema as she’s become older. She recently found some blogs about topical steroid addiction and withdrawal. Georgia has used different steroids in the past when her eczema was severe and found that these helped calm her skin but she now would prefer to avoid them. She voiced her concerns about steroids to her dermatologist who was not very pleased that Georgia had been researching this as a possible route for her. Georgia thinks it would be good if dermatologists supported those patients who wanted to explore other treatment routes than steroids and to always be aware of the emotional impacts of eczema in their consultations.

Georgia talks about how it can be difficult to cope with itchiness, especially in intimate areas like near the bum, and what other people think about her scratching.

It’s like if it’s in a really intimate place, like it sounds a bit disgusting, but I get it right under my bum cheek, like in the crease where your bum meets, meets your thigh. And if I’m in public I can’t just start scratching it, cos I’ll look like I’m trying to scratch my, my bum. And I don’t want people to be like, “What’s she doing? Why is she scratching her bum?” But it’s so hard. So I have to like go to the toilet and just be like arr because of the relief. And I try not to do it if I’m with my friends cos I know they’ll notice and I know they’ll be like, “Stop scratching. Stop it, stop it.” And sometimes people just telling you to stop can make you want to do it more. It, it’s one of those things though, isn’t it? You tell somebody not to do something and off they go and do it. And it almost starts off like a trigger reaction sometimes. So if I’ve got a scra-, like an itch on my leg, I’ll slowly make my, my way up my leg and up my body and then back down the other one. 

Georgia started to get eczema on her upper lip after several years without it. At first she thought was a cold sore.

It wasn’t so severe on my face. It was just there [points to upper lip] that it, that it was quite prominent. And I, as I said, I thought it was a cold sore, so I’d just stick some Zovirax on it and think that it would clear up. And it wouldn’t. And it would, sometimes it would get infected and be a little green. And I think I’d just beg my mum to stay at home cos I didn’t want to go into school. I remember getting, getting boyfriends and kissing and stuff like that, and being very aware that they might think that that was contagious and that they might catch it, and wondering what they’d think. And I, I remember I wasn’t so aware of my eczema. Like it didn’t affect my confidence that much because I’d only suffer with mild, mild things like heat rash and allergy to pollen and hay fever. Which was common within school, cos a lot of my friends had that. But it was only when it started to crop up there [points to upper lip], then I started getting quite paranoid about it. And around my ears as well, I’d always keep my hair down so nobody would be able to see my ears or my neck. Cos that would get quite red and, and itchy, especially in summer because of the heat.

It wasn’t until a doctor at a sexual health clinic asked Georgia about the eczema on her face that she felt it was taken seriously.

And it wasn’t until, which was the funniest thing, I went to see a doctor in a sexual health clinic, just to pick up like some regular contraception or something like that. And it had, my eczema had actually been quite good that day, I was feeling quite confident, cos it was summer and it usually picks up during the summer. I don’t know if it’s because of my, sort of my mental disposition, it picks up because it’s lighter or something like that. And yet all I had was a little bit of dry skin above my eye. And I’d gone in and he hadn’t, he wasn’t the doctor who was supposed to have seen me. It was supposed to have been someone else. But by chance he’d been called in. And we spoke about other things I’d been there for and he picked up on my skin and asked what was wrong with my eye. And I just said, “Oh, it’s just a bit of dry skin. I suffer from eczema from time to time and it’s cropped up.” And it was weird how somebody who was not in that field of work could pick up on it and just thought it wasn’t right that my skin was like that. It shouldn’t have been dry, it shouldn’t have been as prominent or red or... You could see I was itchy because it was quite warm in the room and I was sweaty a little bit and that irritates my skin. And he just said, “How many doctors have you seen?” And I tell, I told him I’d seen about, I think about seven in the past year and a half about it and none of them had done anything properly about it. And I think within about twenty minutes he decided that he was going to write off for a referral to a dermatologist and within about a month I’d seen somebody about it.

And I think that was the biggest turnaround point for me. And it kind of made me lose a bit of faith in some of my doctors because they weren’t, didn’t take me seriously as a patient. I mean I haven’t got anything about the, against the NHS or anything like that. I just felt like I wasn’t taken seriously. Which obviously makes you lose a bit of faith and a bit of confidence in not only yourself, because you don’t feel as though your problem is serious enough, but also because it didn’t feel like they’d picked up on it properly. So I think when I, when that happened, it, I really felt like it was going to turn around and it would be getting better soon because he’d picked up on it and I’d be referred to a dermatologist. Which is what I’d been asking for ages.

Georgia has moisturiser ‘stations’ in the several of the places where she spends her time.

I’ve got, have little sort of stations round my room and round my house – so if I need it, it’s easy to reach. So if I wake up in the middle of the night and my face will be dry or itchy, I’ve got it down the side of my bed. And I’ve got it all in one place. And then I have bits and bobs in the bathroom. And I have creams at my friends’ houses. At my boyfriend’s mum, she knows to keep stuff like antihistamines and moisturisers for my skin. I always carry thick moisturisers, especially during winter, because it’s so, it cracks and it gets really dry. I’ve always got little bits and bobs in coats. I’ve [laughs] really got to keep my on it cos I have so many and I lose them all. But I always have to keep them with me. Because if I don’t have something as simple as like moisture there [points to upper lip] from the start of the day, it cracks and it swells and it gets really itchy and red.

Georgia worries that other people will smell her emollients.

I always feel really stinky. I’ve been, I was using a product called Cetraben. And I had, I have Hydromol as an ointment and Hydromol… as a cream. And they stink. I just, it’s the paraffin I think that is so prevalent. So cos I can’t wear make-up or anything scented, I’d just be in public and just be like, “[sniffs] What’s that smell?” And then realise it was me. And like oh, it’s just horrible. Like if I’m sitting at home and I’m trying to be intimate with my boyfriend, I’ll think, “Oh my God, I stink. I don’t want to, I don’t want to be intimate with you because I smell and I think you might pick up on it.” [Laughs] So, yeah, being slimy and sticky all the time is really annoying as well. Cos I can’t touch things. I can’t, that’s mainly why I keep my hair up all the time, because I can’t touch my hair cos it gets greasy and sticky easily. And the same if I’m, say if I’m just doing that [itches eye], if I get it in my eyes, my eyes are all slimy. And I can’t touch my phone or pick up things if I’ve just put moisturiser on. I can’t do things so it’s a bit annoying in that aspect. 

Georgia finds that baths help her relax and using bath oils keeps her skin moisturised.

I bathe every day, normally at night. I like hot baths but I have to wait, I do like hot baths but I’m not gonna lie, I’m not supposed to have hot baths. But I feel like it’s my only vice, so I never want to get rid of them – it helps me relax a bit better. I will bathe in, I’ll either use one of my creams which will, which you can use as an alternative to shower gel or as a cleanser. I will use a bath oil as well to lock in the moisture. I will do that for about twenty minutes.

Georgia has researched online about topical steroid withdrawal. She’d like to explore other treatment routes with her dermatologist.

One thing I’ve come across recently is topical steroid withdrawal and addiction. When I’ve been using, when it got quite severe and I was referred back to my dermatologist, I was put on courses of prednisolone and Trimovate and I’ve had Protopic and Betnovate. Which are all, Protopic isn’t a steroid but they’re quite, the Betnovate and the Trimovate I think are quite potent. And I wanted to stay away from that because, as I mentioned earlier, I like naturally occurring products, something that’s not gonna have serious side effects on my skin. Which, what I’ve been reading up on is skin thinning, it becomes red and it can deteriorate. And it wasn’t really something I’d wanted to, I didn’t wanna go down that route because my skin is already quite red anyway. And I think it, it’s a bit harsh. But after talking with my dermatologist, who wasn’t too happy for me to go down the route without steroids I think. Because it has such a, it does have a really high success rate. I won’t, I won’t deny that. They’ve been using them for 50 years or so and they are really successful with people that have severe eczema. But after reading up on topical steroid addiction and withdrawal, some of the symptoms, such as regularly infected skin, it’s constantly swollen, red. There’s like a scent of iron actually that I noticed on my skin, which is quite odd. And reading up on some of these people who do suffer with it and are going through the withdrawal of it. It’s, it’s quite severe what they go through. Even though s-, steroids are such an easy route to go down. They, you just put it on for about three weeks or so and use it intermittently, and your eczema is gone. But these people are trying to sort of push the toxins and steroids out of their body, and have been for about two or three years. And they’re still going through symptoms of s-, swollen skin, it’s red, it’s cracked, it’s infected all the time. And I don’t think mine is as severe as theirs, possibly because mine is more stress related and my allergies aren’t as bad as theirs. But it is still a route I would like to explore. And I think I would really appreciate it if it was an option that doctors and dermatologists were more prepared to explore. Rather than accepting that the only route is sort of scientific research instead of going down the herbal route. And sort of just allowing a bit more preference from the patient, not necessarily what they’ve found to be successful in the past.

Georgia describes what it’s like having phototherapy at her hospital.

It’s pretty much like going on a sunbed really. I will go in and I will stand in there fully naked. And there’s, you need to keep your eyes closed if you’re not using like a visor or like goggles. Cos I think it has quite a bad impact on, on your eyes or your retinas. I’m not too sure. And it increases bit by bit. It’s a programme of about 24 weeks I think. So it’s quite long. And it’s literally from, the first session is about 20 seconds and it will go up in a matter, it will go up by 4 seconds a piece. So you will be in there for longer and the dose will be higher. And it’s, she, my, I think my, it’s supposed to turn around within about two months. It’s to start showing the like effects of your skin healing. But I think that’s, she, why she was worried. Because it didn’t, it wasn’t showing much of an effect of healing in certain parts of my body.

Georgia would like to manage her eczema in a more “holistic” way. She’s taking supplements to see if this helps.

One of my friends is quite holistic in her approaches to stuff. She’s one of those that doesn’t like taking paracetamol or taking antihistamines for things. And I know her mum’s very into that kind of thing. And I think it is one option I’d like to approach, the holistic avenue I suppose. Cos I’ve always used like medically proven substances and things like that. I’d never thought about using, I don’t know, evening primrose oil or doing a liver flush or something like that which you can do that just throw out bad bacteria that can affect the way your skin reacts to stuff. I’ve started using more things like, taking cod liver oil and evening primrose because they are supposed to help with keeping essential fats within your body. So that will help keep my skin moisturised. I’ve yet to see the difference, but I’ve only been on them for a couple of weeks, so.

Georgia talks about scratching itchy eczema as leading to infections.

It’s like you’re trying to dig the itch out of your skin. And that’s why it gets so in-, it’s such a bad thing to scratch. I mean it’s alright if you’re just there sort of mindlessly stroking and scratching your skin with your nails. But if you’re trying to dig that itch out, you’re taking away so much skin and allowing for infection…

Yeah.

…to get in and things like that. I think I’m really bad for that.

Georgia has eczema above her top lip and finds it often becomes infected.

I’m quite lucky actually, I don’t get ill that much. I don’t get colds or coughs or fevers or things like that. I think my body has decided that eczema is the only thing [laughs] it’s going to let me have. But if I do get something like a, something as simple as a cold or a cough, especially because it’s been there [points to above top lip], I’ve had this part of my skin infected quite a bit. Because obviously like the bacteria in having a cold will infect that bit. And I’ll have to go back, go to the doctor’s and get antibiotics for something as silly as a cold because it’s infected my skin. But I am quite lucky in the sense that I’ve never contracted any kind of serious infection such as, I don’t know, things like MRSA…

Oh yeah.

…or something like that. I have read people’s blogs that have picked up those kind of infections because their skin is so open and inflamed and things like that.

Georgia was in hospital for infected eczema when she was little.

When I was about 3 or 4 I was admitted into hospital because it was infected, because I’d been scratching so much. I remember being there for two or three weeks. I don’t really remember it that much. I’m not too sure if it’s because I was so young or if I’ve just blocked it out because it was such a, like a traumatic experience. I know from my mum it was quite traumatic cos obviously I was so young and I didn’t understand it. And I didn’t understand why people would tell me to stop doing something that was so natural to me. When I was there I remember I was given wet wraps. I was put into isolation for a while because they thought my infection was so severe that I might’ve caught it of other people or I might give it to other, other people. I remember being given loads of prescriptions, having a bath I think two or three times a day to keep it moisturised because it was so dry and it was so infected. Ugh, it was horrible [laughs].

I remember coming home. My dad took over most of it. My mum kinda took a step back. I think it was quite painful for her to watch me cry and scratch and not understand it.

Georgia felt positive and hopeful after her first dermatology appointment.

I was really happy cos, it took me a while to get hold of all the prescriptions cos there were so many. But once I started taking them, it really started to turn round and my face was clear and my skin was smooth. I wasn’t red. It was really nice to feel comfortable in my own skin again. I didn’t, I couldn’t, didn’t have to go out and feel like everybody was looking at me because my skin was so, so red and horrible. And I could wear things that I wanted to wear. I could get my arms and my legs out. And I could wear like a, like a loose neck instead of having to keep it covered up cos my neck was so sore. It was just nice to be able to get back to what normal would have been if my skin wasn’t so bad. So I could dress like everybody else, do what everybody else is doing. And I felt comfortable sort of seeing people, being out and about.

Georgia was referred to see a counsellor to talk about her low self-esteem.

It’s something that my GP arranged. Cos I’d been speaking about it with my boyfriend and he’d noticed how, how much it had been affecting me. I mean I wouldn’t go out, and I’d cry because I couldn’t go out cos I felt horrible. Or we’d, I’d planned to go out and my skin wouldn’t be to the level I’d like it to be so I’d be upset. Or my skin would hurt that much that I’d be upset. And, and I wasn’t coping with it how I should have been. Cos I didn’t have a positive mental outlook. I was just down in the dumps and feeling sorry for myself. And he just told me that if I didn’t sort it out, then it was just gonna carry on being like this and I was just gonna stay stuck in this rut. So we spoke about it and I did agree with him that it was having a big impact on how I was spending my life. Cos I was spending a lot of time inside. I wouldn’t go out with my friends.  So we, we went to the GP. And she understood that it was having an effect on my life and that I didn’t, wasn’t enjoying the things that I used to enjoy or enjoy going out with my friends. 

Georgia talks about the worries she had when she went on holiday.

I remember the first time I went abroad with my friends, I was scared about whether I’d lose my suitcase and all the creams that were inside it. And what would happen if I did and what I’d be able to get if I didn’t have them. Or if I’d even be allowed them in the country, because I know some countries have certain restrictions on what you can take in medically wise and things like that.

I went with my boyfriend and his brother and his wife we went to Italy. And it was quite cold, so it wasn’t, there wasn’t a lot of heat to aggravate my skin and make me hot and bothered. But it wasn’t too cold that it would dry out my skin. So it was just right in that sense. But I remember packing and getting really stressed out about what I could take and about certain weights and what clothes I should wear and things like that. And it came out on my face and on my skin all over my arms and my chest area. And I was red, like bright red and puffy for about the first half of the holiday. And then I calmed down and I was relaxing and enjoying myself and it seemed to dissipate and it went back to normal almost. So in that sense it was quite traumatic for the sense that it was my first holiday and I had to sort it all out on my own. And I had to worry about all those little things that people shouldn’t have to worry about [laughs] when they go abroad. It’s just little things that really irritate me that, about having eczema. 

Sleep deprivation is a concern for Georgia. She has a number of strategies for winding down at the end of a day.

I get anxious before I go to sleep because I’m scared I’m going to wake up in the middle of the night and get itchy. And staying asleep is hard because I’ll wake up itchy in the middle of the night. And then I’ll wake up in the morning and I’ll be tired and I’ll be itchy because I’ve not slept properly and because I’m aggravated and irritated. Waking up in the middle of the night is worse, worst I think because I’m sort of semi-asleep and subconsciously I will just scratch or whatever, just to get rid of it. I won’t even be thinking about what I’m doing. My wrists take the full brunt of it. Cos I just, I’m sleeping there like that [gestures to hands under head] and something stupid like my hair will have irritated it and I will just dig at my skin just to get rid of it so I can go back to sleep until I don’t think about it at all. Anything to get a quick relief.

I try and keep my room as cool as possible so I don’t wake up hot and irritated. I try and use light, light bedding, so again I don’t get hot. I’ve been using Atarax antihistamine which has drowsy effects so that helps me sleep a bit better, drops off a bit better. I try to sort of, sort of about an hour and a half before bed I’ll get into my routine of 

Getting into the bath and putting on moisturisers. And calming myself down, making sure I’m not watching TV or on my phone or anything. I try and sort of, I don’t know, just, not meditate but calm down and think about things. And maybe read a book if I can or just potter about and tidy things up and put things away. Just anything to sort of calm me down and slow my processes down, so I’m not irritated or aggravated about anything. Which is what is hard about if I go out, I can’t do those things when I come back. I’m usually just so intent on getting to bed cos I’m tired or I’m still a bit drunk and just want to go to bed. It is a bit difficult.

As Georgia got older, her parents became less involved with her eczema.

I’ve never asked them to step back, they’ve just done it themselves. And I don’t know if that’s because my behaviour has made them more inclined to do it, or whether they’ve done it because they want me to be more independent about it. I don’t know. My mum has always wanted to come with me to my appointments when I was older. But I’ve always said, “I want, I want to do it on my own because I want to speak to my doctor.” Cos [laughs] she had a habit when I was younger of coming with me to the doctor and saying this and that and deciding what was being done for me. And I needed to take that independent step to get it sorted on my own. So I am thankful for that. And I think even if they didn’t mean to do it, it’s still had a good impact on my life.

Georgia’s dad was very involved in her eczema treatments as a child.

My dad had the most prominent role in my eczema. He was always there to put my creams on for me, bathe me, come and sit with me in the middle of the night cos I couldn’t sleep cos it was so itchy and aggravated. I think it was very painful for my mum to watch me grow up with it and stop it from, me from being sort of a normal, healthy child. That I couldn’t, I couldn’t go out and play with other children because they might be, they didn’t understand what was wrong with my skin. Or I couldn’t go, I couldn’t go swimming. I never learnt to swim as a child because my skin was so bad. Which has been a hindrance. And it, it’s just general things like that that have had a big, a big impact.

Georgia is careful to avoid triggers when she uses the bath and washing machine.

I have to keep my bath really clean, especially cos I share it with my mum and dad and my boyfriend. I need to clean it after every time I use it and before I use it. Cos I just can’t risk being, sort of my bath being well, not infected but having some component of what somebody else has used. Because I can only use the things that I know will work for my skin. I couldn’t go out and buy like an Imperial Leather bath soap or something like that and expect it to work. Even with some, even though I like using Lush products, I can’t use some of theirs, like their bath bombs. Because they’re so heavily, sort of potent with smell that the fragrance will irritate my skin and whatever’s been made to colour it will irritate my skin. I try to do what I can, I find it hard to do, do the washing up cos I need to wear gloves all the time. And if I wear the gloves my hands will get sweaty and dry and itchy. I have to be careful with what kind of chemicals I use. My dad’s always very particular about not letting me do he, like heavy cleaning things like cleaning windows and carpets and floors and things like that, cos he doesn’t want to expose me to those type of chemicals. And he’s worked in he used to work, worked with solvent chemicals and he was always really careful about using the washing machine for my clothes and for his. So he’d, if he put like his overalls in, he’d make sure he’d sterilise the, like the barrel at least three times before he put my stuff in and stuff like that. So I have to be really careful, really careful in that kind of thing. But I think, I look forward to that when I move out, that I can, I don’t have to worry about that too much. Because I know only I’ve used it and I don’t have to worry about everybody else using stuff and things.

Georgia and her friends support one another in practical and emotional ways.

I think my friends help me deal with it so m-, deal with it well. Cos they have their own problems, so we sort of tit for tat, if you know what I mean. Like we, we swap our problems and we know how, it’s a good support system that they have there for me. They, they’ll always be there with an emergency pot of cream if I’ve run out or they’ll be willing to come with me to the doctor’s and things like that. And they’re understanding that it will stop me from doing certain things that I want to. So they’re willing to go on slightly cooler holidays without as many activities that can be done and things like that. I think my friends are my biggest support system because, as, as I said, it has such a knock-on effect on my confidence that I don’t really want to go out and participate in any of the hobbies that I like to do.

Georgia decided against training to become a vet because she’s allergic to animals.

I know just from being in contact with animals that I’m allergic to even, we’ve had cats and dogs and, sorry, cats and rabbits and birds, and I’ve been allergic to all of them. I’d love to have pets. I love animals. I, when I was younger I wanted to be a vet. But with sort of the way my skin is, I know that couldn’t be, that wouldn’t be a possibility. Cos I’d suffer too much to, to be doing something like that.

Has it affected any other sort of career options or things you’d like to do?

No, not in, not in that respect, no. I think it’s, because it’s held me back a little bit, it’s made me more sort of thoughtful about what I want to do with, do with my life. Like I know I like to help people. But it’s helped me, I think sort of dropping out of my A-levels and having to have a think about what, what route I’d have to take it, in that respect it’s, it’s helped me mature a bit more and think whether that would be a suitable option for me in, for the kind of person I am.