Damini

Age at interview: 21

Age at diagnosis: 4

Brief Outline: (Audio or text only clips) Damini has had psoriasis since she was 4 years old. She has had two major flare-ups: one when she was a teenager and one last year. Having psoriasis has been very upsetting for Damini, something which she has only recently shared with family and close friends.

Background: Damini is 21 years old and a postgraduate university student. Her ethnic background is British Asian.

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Damini was diagnosed with psoriasis at the age of 4. She’s had two major episodes of her psoriasis flaring up, one during secondary school and once most recently during her university exams. These have been difficult experiences for Damini. She was bullied during secondary school for her psoriasis. Her latest flare up of psoriasis knocked her confidence a great deal and developed on her face, a part of her body which hadn’t been badly affected before. She finds that stress is a major trigger, although there is often a delayed reaction so that a flare up can occur later e.g. just after her exams. She has noticed that there can be a vicious cycle whereby lack of sleep, being anxious and worsening psoriasis all come together.

Damini has tried steroid creams and phototherapy for her psoriasis in addition to moisturisers. She has seen a dermatologist only once and prefers seeing her family GP as he is aware of her treatment history with psoriasis. Damini has also been to India to seek advice on treating her psoriasis with herbal remedies. This included dietary rules which she followed for 6-12 months. It seemed to help but she found that the restrictions on food became too much to cope with, but she still tries to maintain a healthy diet. 

Psoriasis has a big impact on Damini psychologically and she finds it very difficult to socialise during a flare-up. She tries to cover up her skin as much as possible; for instance, even though her neck wasn’t affected by the latest episode of psoriasis, she often wore a scarf because it made her feel better to be covered up. Making eye contact was especially hard because she worried that people were looking at the psoriasis on her forehead and around her eyebrows. She wasn’t able to wear make-up during her most recent flare-up; she found other ways to cover up her face, such as by keeping her hair down, getting a fringe and wearing her glasses. As her psoriasis cleared, she started to gain confidence and, for example, wear short-sleeved tops around the house before going out in public in them. 

Damini didn’t used to tell anyone how badly psoriasis was affecting her. She kept her feelings to herself because she felt ashamed and feared that other people wouldn’t understand. It was very reassuring for Damini when she found others online talking about the psychological impact of psoriasis in their lives. Before this, she hadn’t realised that others might feel the way that she did about her skin. She also finds it helpful to see people’s ‘before and after’ photographs. Damini has become more open to talking about her psoriasis with family and friends now. She sometimes worries though about meeting new potential partners because, for her, psoriasis is “a conversation that you don’t know how to bring up”. 

The financial costs associated with psoriasis for Damini include not just medical prescriptions but also shop-bought products such as bath salts, covering-up clothes, aloe vera gel and different brands of make-up to try out on her skin. She feels that she is constantly trying to find something that works and it can be disappointing when this is only temporary. Treating her psoriasis can also be very time-consuming as she has to wake up early to apply the creams and allow them to dry before getting dressed to go out.

Damini’s advice to other young people with psoriasis is to try not to let it affect them. She thinks that doctors should also talk to their patients more; she encourages doctors to listen, not just tell patients what to do, but instead to ask for an insight into what the person is feeling. Damini thinks it would be helpful too if doctors told patients about a full range of treatments available for psoriasis to give some options.

Damini isn’t worried about the lasting marks on her skin from psoriasis and think it might stop psoriasis from returning in those places.

Could I ask a bit more about scarring, cos you mentioned a bit earlier and what your experience with scarring has been?

Yeah, yeah, I’m just left with, it doesn’t affect me. I don’t, I find that people haven’t really noticed it. I think it’s just through my eyes that I can see it. But I haven’t, people haven’t, as far as I’m concerned, people haven’t noticed it, haven’t mentioned it, haven’t asked me questions about it. Yeah. 

Is it something that any of the doctors have mentioned before?

They have said that you’re left with white patches, but they’ve never mentioned like permanent patches which I’m left with. But I have read up online and it is quite common to have with psoriasis. But I find that the scars are a good sign, because I’ve noticed that the psoriasis never actually comes back on that patch where I have the scar, so.

When Damini has a flare-up, her psoriasis plaques develop quickly.

Could you tell me a bit about how you first started noticing?

I started noticing a few patches on my arms. I didn’t really take it seriously. And then all of a sudden it just took over and I was covered, so there wasn’t a time where I thought ‘oh, I need to go to the doctors to control it again’, because by the time, I was, I was going to – it just came back. It does seem to, when I have a flare-up it does come back quite vigorously, quite quickly. 

Was that the same when you were a teenager?

Yeah, as well, yep. 

Damini wore long sleeved tops when she had visible psoriasis.

So my recent flare-up, when that came up, it was just always long sleeves. I’d wear scarves. As it started going away, I slowly started wearing short sleeves again. When I did have my outbreak I wouldn’t even wear short sleeves in the house. It would always be covered up. So, first of all, I started wearing short sleeves in the house just to slowly get my confidence back. And then, one day, I had to pop into town and I thought, I’ll just try going in a short sleeved top, see how I felt. It was hard to start off with. But then I realised no-one even looked at me. So I just thought, well maybe it looks better than I actually think it is. And I think that just boosted my confidence.

Damini talks about gender and the use of make-up.

I did used to think that it used to affect girls more but then nowadays I think they’re both, both genders are equally insecure about themselves. Yeah. I think girls, I think it’s easier for guys to cover up, because they don’t have to wear dresses and skirts, whereas girls naturally want to wear different clothes and that’s harder, I think. 

Is that similar with make-up as well?

Yeah. It’s harder to apply certain make-up, so that’s hard, whereas guys, they don’t really have to. But then, on the other side, girls can use make-up to cover up, whereas you wouldn’t find that a guy would generally. And also, girls can keep their hair down to cover up any patches. That’s what I used to do quite often. With guys, they don’t really have that option. 

Damini started using herbal medicine and following a diet when she visited India. She found it difficult to stick to the diet restrictions.

Yeah. I went to India to try some herbal remedies from there. But they gave me a list of dietary requirements that I had to follow and I did follow it too, for about six months to a year, but then after, it just got too much and it was, I did notice it was helping, but it just got too much and I couldn’t continue doing that. 

Could you tell me a bit about what those dietary requirements were?

Yeah, they told me not to eat anything spicy, anything with salt in it, certain, certain fruits like bananas mangoes, I can’t remember the others. Certain-, I think wheat, they said no. That’s all I remember so far. 

That’s quite a lot of restrictions then.

So, it was difficult to I just basically lived on pasta [laughs]. 

[Laughs]

But, yeah, it got too much. Yeah, so I stopped that. But it didn’t come back after, straight away. Patches came back, but it didn’t-, I wasn’t where I was at the start.

Damini explains how being too tired to revise for her exams led her to feeling stressed. She thinks this affected her psoriasis and felt it was a “vicious cycle that you’re trapped in”.

And the itchiness is quite severe as well.

Could you say a bit more about the itchiness?

Yeah, that, well I do try to control myself. That hard. But yeah, sometimes you just have to scratch it [laughs] yeah. It’s usually at night time, the itchiness just comes back. 

Does that effect your sleep and how much sleep you can get?

Yeah. It did to some extent. Some nights were bad and then sometimes it was just completely fine. So it’s just how it feels. 

I found it really hard, especially when I was revising towards the end of my exams, I would feel really sleepy during the day and just that would make me panic even more that I’m not revising, which then has an effect on my psoriasis and it’s just a vicious cycle that you’re trapped in.

Damini found it helpful to read about other peoples’ experiences of psoriasis and has recently started a blog to share her own.

I’ve read up on about how it effects people psychologically. I didn’t actually realise that people actually think the same way that I think, that it does affect you psychologically. You just think it’s a skin disorder, but it’s more than a skin disorder. The hardest thing I find is that you have to live with it every day and you get a, there’s not a minute that you don’t think about it. You look in the mirror and it’s there. You go to shower and it’s there. And I think that’s the hardest part. So through like reading online, I noticed that a lot of people think the same. 

It made me feel better that I’m not the only one. And yeah, it’s just like a big support group really, that it feels, it makes you feel better that people, people are there that feel the same way and that are coping and, and it helps when you see people that are positively coping with it and are really dealing with it well. That helps. 

I’ve recently started my own blog. I haven’t posted on forums or anything. But cos of my last outbreak, cos it did affect me quite severely, psychologically. I decided to create a blog to help others as well. And, yeah, so I’ve been working on that recently. 

Sofia encourages other young people to use their treatments regularly.

I would say it’s all right. You just have to cope with it and regularly use your treatments and eventually you would get used to them and just like follow the guidelines of the treatments. You should also not avoid using them, because the quicker you start using the treatments and following them like the quicker it would go away. Then it will be easier to control and will eventually go away or be kept to a minimum. You should also seek advice from support groups if you are having any problems.