Lola

Age at interview: 17

Age at diagnosis: 14

Brief Outline:

Lola developed plaque psoriasis when she was 14. She has only recently noticed that psoriasis can have a big emotional impact on her. Lola would prefer to not rely on medications, like steroid creams, and she has recently started yoga to help with stress.

Background:

Lola is age 17 and a sixth form student. Her ethnicity is White British.

More about me...

Lola has had plaque psoriasis since she was 14 years old. Her first patches were on her elbows and scalp. At first, the doctors were unsure if it was psoriasis or a fungal infection. Lola felt disheartened when it was confirmed as psoriasis because she understood that it would be something that stayed with her for life. Her GP gave her a big leaflet about psoriasis but Lola feels there was a lot of information missing, such as that psoriasis is linked with increased risks of arthritis and depression. It was off-putting when Lola discovered about these other health aspects and she says that she doesn’t look online for information as much anymore. Lola’s psoriasis affects different parts of her body; for example, she recently noticed patches of psoriasis in her eyebrows. Having psoriasis on her scalp also caused her lymph glands to swell up once when the skin became infected. Lola’s psoriasis is sometimes also painful and itchy, which has an impact on her sleep. Stress is a major trigger for Lola’s psoriasis and she recently started yoga to help with managing the impact of this on her psoriasis.

Lola has been prescribed different steroid creams and vitamin D creams for her psoriasis. She finds that these are time-consuming to use, especially because she has specific creams for different parts of the body and she has to wash her hands in between using them. Another downside is that putting the creams near her hairline makes her hair greasy. Lola also used a special shampoo for a while but stopped as she didn’t think it helped her scalp psoriasis much. Last year, Lola decided to cut out steroids as she’d heard from a friend that these could have bad impacts on your health. She tried an alternative approach which included Lola changing her diet and trying meditation to cope with stress. Lola says it seemed to work during the summer when she was less stressed and out in sunlight a lot. However, Lola’s psoriasis flared up quite badly due to stress at sixth form and so she has returned to using the steroid creams from her doctor again. During the flare up, she became more self-conscious as the psoriasis spread, including onto her face, and she would dress to cover up her psoriasis. Lola finds that she has to be regular with using the creams or her psoriasis will be more severe. Lola says that another “step back” with managing her psoriasis is when she wears make-up, as this dries out her skin. She thinks she may be getting a referral for phototherapy (light therapy) soon and she’s hopeful about this.

Lola says that it’s only quite recently that she’s realised how much of an emotional impact psoriasis has on her. Lola hasn’t ever noticed people stare but she says that people ask her about it more when the psoriasis is visible on her face. She thinks that teenagers at school can be judgmental, though she feels less self-conscious about it now that she and her peers are a bit older in sixth form. Lola says that she doesn’t mind explaining about psoriasis so long as the person asking her doesn’t then make the situation awkward or embarrassing. Skin flaking is an especially difficult part of psoriasis for Lola, for example when there are bits of skin on her clothes or desk at school. It can be distracting to see the plaques and Lola has to stop herself from picking at these when trying to concentrate on her studies. Psoriasis has meant that Lola no longer dyes her hair or has it professionally cut, as she’s worried that it would be embarrassing for hairdressers to see the psoriasis on her scalp. She tends now to wear her hair up as she feels it is less itchy and cuts it herself. 

Lola says that having psoriasis as a young person can mean extra responsibilities and stress at a time which is already tough with exams and other life decisions. Her advice to other young people with psoriasis is to talk to others with the condition. She also feels that doctors should give more information, such as explaining that there are different types of psoriasis and related health conditions. Lola emphasises that emotional support is important. For example, she appreciates her family, friends, girlfriend and work colleagues who compliment her and make her feel proud when her psoriasis is improving.

Having psoriasis on her scalp is difficult for Lola because of the skin flaking.

What’s really nice about brushing my hair, is it gets rid of it and that kind of helps with the itch. It sounds really horrible and gross talking about dead skin falling off you. That for me is really hard at school is that like I will take off my jumper and suddenly whoosh there’s like dead skin, and I’m like ‘ahh’ or looking down and like I move my hair and I can see it on my clothes or on the table if I’m in a lesson or studying. And that for me is just like-, if I was someone else I’d be like, “Ahh that’s horrible.” Or like, you kind of-, if you see-, you don’t,- I don’t know for me I just feel like so like embarrassed and just want to kind of curl up and not be there anymore. Cos you’ve got to deal with it, or like on your jumpers or if I look, I’m like ‘oh it’s on my jumper, just crap, I need to get rid of that.’ 

Lola’s GP wasn’t sure at first whether her symptoms were psoriasis or a fungal infection.

Can you remember what your first appointment about going to see the GP with psoriasis was like?

I remember going to see a lady and-, I can’t remember, I think, I can’t remember, I think the spots might have been on my legs, or they might have been on my arms, I can’t remember. But she was looking at one spot and she couldn’t decide whether it was a fungal infection or a steroid-, not steroid, or psoriasis. But they gave me steroids and in a fungal cream, so basically they put-, to eliminate what it was they gave me this cream and the effect of that cream was to say whether I have psoriasis or a fungal infection. So it took a while before they said I’ve got psoriasis, and then from then on they kind of I guess gave me weak steroids and gave me lots of shower gels and moisturisers and stuff.

Lola thinks she should have been told by her doctors about the chances of developing other conditions, like psoriatic arthritis.

I remember thinking ‘I really don’t want this to be psoriasis because I know it’s never gonna go away.’ And I did feel a bit disheartened when they said, “This is psoriasis.” And they printed- out, on my first doctor’s appointment they printed out this massive leaflet and they said, “Do look at websites,” and it kind of-, they said it’s linked with heart diseases when you’re older. They didn’t tell me it’s linked with arthritis, they didn’t tell me it’s linked with depression, they didn’t really-, what was annoying is that we’ve kind of had to find out a lot for ourselves. They didn’t tell me the different types or- of psoriasis that there, or where I could like, they didn’t tell me where to look out for it in a way which is annoying because it’s kind of you’re finding out for yourself. So I think my main like annoying point is that I knew I could never get rid of it and it’s always going to be there and especially when I’m stressed, which is kind of handy knowing that like when my skin flares up I know I need to change something.

Lola’s psoriasis is better in the summer, but the effect doesn’t last.

Sunlight, yeah. Over the summer, I know it wasn’t the best summer we’ve ever had but I did notice and it is kind of a common fact that vitamin D is really good for psoriasis. And I found that if I got in the sun then it did do what happens when the su-, it has steroids put on it. So it’s like reducing, it’s not as- kind of the- they’re called plaques, they’re not like- it’s not as like inflamed or red. When psoriasis goes away is you get like loads of little scars, white scars kind of, and they’re not really scars it’s where the skins either inflamed or like flattened down in a way so it’s got to come back to its normal functioning level after being disturbed, oh I don’t know, being affected for so long. And I started to get those which for me is a signal it’s getting better. But then as the sun started to go away and as I came back to school and my stress of being back at sixth form came back, it kind of reversed, started happening and it wasn’t getting better anymore, it was getting worse.

Lola finds applying topical treatments time-consuming. She sometimes prioritises areas to focus on, such as her face.

It takes me for ages now to ever-, twice a day I have to put cream on and sometimes if I’m going out, staying at a friends or I’ve got a really busy day then I don’t always have time to put all this cream on because it’s all over my body, and it’s not necessarily concentrated on one area. I spend for ages having to find it, remember where all these spots are to reach and put creams on, different creams, wash my hands between the creams, that I don’t always have the time to do it. And if I don’t have the time to do it then it get-, I notice because if I’m run down or I’ve had a late night then it easily impacts it, and it will get worse. And that’s annoying is that if I’m not regular with the cream that I kind of have to not start again but I’ve taken a step back. But like sometimes I don’t have the time to do it, to do the cream twice a day, or to do all my body like necessarily, I might only have the time just to do my face cos I want to kind of get rid of the psoriasis on my face or my arms. But I might not be able to do my back or my shoulders. So it’s annoying that you have to kind of be really regular with it and it’s really time consuming.

And that’s kind of the effect that I’m noticing now, is that before school it sometimes means I don’t get to eat breakfast or late at night when I’m really tired I can’t be bothered to stand in front of a mirror and like try and find cream, like get my cream to put on my spots.

So it’s the time at the moment is really annoying me.

Lola uses a combination of steroid and vitamin D analogue creams.

And then there’s one steroid cream for your normal skin and then there’s kind of a weak steroid slash D- D3 cream so that’s vitamin D for your face. It’s the kind of more sensitive parts of your skin, your ears, your armpits, I don’t know if you’ve got it on your groin, so anywhere more sensitive that you don’t want to be putting strong steroids on. And yeah, I think that’s about it. And I know if my psoriasis doesn’t get any better they would like send me to see a dermatologist but then the creams I think from then on are quite harsh, and for my age they don’t want to put me on such strong creams.

At one time, Lola stopped using steroid creams and tried to manage her psoriasis with “a holistic approach”.

Could you tell me a bit more about the holistic approach that your friend had told you about with psoriasis?

Kind of increase your protein levels, look at Epsom salts so having a bath in them. Using really organic kind of shampoos and moisturisers so you’re not putting any chemicals on your skin. Getting in the sunshine as much as possible. Controlling stress and meditation, I wasn’t very good at that. Kind of taking time for yourself and doing light exercises to get rid of stress really, cos doing exams is not helpful with skin. Look at homeopathic remedies and, and I know acupuncture has been found to help it. Yeah, mainly proteins, fish oils, primrose oil, I know that was helpful I think. I guess it’s trying to make your skin more moisturised, I’m not sure. It worked when it was sunny and in the summer when I was less stressed it got better and it looked really good for a while and then I came back to school and it just went crazy in a way.

It spreaded a lot.

So are those all the things that you’ve tried including like the acupuncture?

I didn’t try acupuncture. I tried reflexology which was to try and get-, it doesn’t say it’s gonna cure your skin disease, I mean you can’t cure psoriasis anyway, but it- it makes your immune system, or your body kind of try to attempt to make your body work better, and that’s kind of trying to get my body to fight the skin disease in a way.

But I didn’t- [sigh] it worked but it- not for long. And I’m not saying that you shouldn’t try it, I’m just-, it didn’t work for me at that time.

The itchiness of her skin keeps Lola awake at night and she sometimes scratch her skin in her sleep.

Sometimes I wouldn’t be able to get to sleep because it was itching so much, or I’d have to like cool my skin down. I’d notice sometimes late at night it would get really really, really itchy and you just can’t get to sleep cos you’re itching constantly. Or I’ve woken up the next day to see blood on my arms where I’ve itched my skin without noticing. it’s kind of frustrating. I guess I would be tired if I haven’t slept and waking up in the night and itching like-, and my head would be on fire sometimes and that would drive me crazy. Or just in the day I just get really kind of worked up because I couldn’t get the itch to go away and it’d drive me round the bend.

And I couldn’t find anything to kind of release that itch which was really annoying. And it kind of becomes so much part of your day is that your-, like everything itches but you can’t itch it because then that makes it worse and you’re just not gonna get better.