For this Moon Face Talks I spoke to another member of the autoimmune club about their experience with psoriasis. We cover the shame that comes with having a visible illness, Star Trek, faith healing and much more. This would be a great piece to send to someone younger dealing with an illness that affects their appearance.
LC: What were the first symptoms of your autoimmune disease? If you don't mind saying, say as much or as little as you want to.
X: So I had chickenpox when I was five, really bad chickenpox. And as the chickenpox healed up, I had this massive skin flare-up. So I was like, covered from head to toe with what kind of looked like chickenpox, but wasn't. And it was this skin condition called psoriasis, an autoimmune disorder. My dad had it. He just used to get patches on his elbows. But I literally had it everywhere. And it's weird answering this question because I can remember having chicken pox but I don't remember the first symptoms of having psoriasis at all. My memories start with the treatments. I got diagnosed very quickly because I think it was very obvious to the doctor what type of psoriasis I have, although this has slightly changed over time. I had Guttate, which is kind of like little blobs. Some people get big patches or some people get little blobs, which actually is almost worse because I do remember going around as a kid and people thinking that you've got chicken pox or that you're infectious or you've got scabies.
LC: That's something I really relate to, especially with the whole monkeypox situation at the moment. When people with skin conditions are being filmed on the tube and people are accusing them of having monkeypox, I’ve had to wear long sleeves on a 30-degree day, because I’m scared with my rash someone’s going to film me or accuse me of having monkeypox on the tube.
X: I think there's a lot of shame around it. I think as a kid, maybe I didn't entirely understand that. In my family, we were really lucky, we'd go on sunny holidays and the sun clears it up. So I would get a bit of time each year where I would be free of it. But I definitely remember feeling extremely self-conscious, especially as a teenager and that I had to hide behind long sleeves. I had really long hair. I used to literally have my hair covering my shoulders and arms.
X: I think the question [you sent me about] medical trauma is interesting because actually, I'm not at all familiar with this term. I have to kind of find out what it means.
LC: I think it's becoming more and more common to talk about and it's only because it's something I've experienced. I think we've got to be careful because, especially with the NHS, people are just trying to do their bloody jobs. I had another autoimmune condition at Oxford and it was a neurological autoimmune condition, but they thought I had epilepsy for two years and kept on testing me for epilepsy over and over again. But after each test for epilepsy, they'd be like, “Maybe it's a conversion disorder”, so it was either anxiety or epilepsy. I never had a blood test, and so I had such painful psychoanalysis trying to get rid of my autoimmune condition because the doctors were telling me it was a conversion disorder. And then after two years, I had a blood test and it turned out it was an autoimmune condition. That's not to say that functional neurological disorders aren’t real, or are less valid. So that experience was traumatic and it wasn't just because of the illness itself, it was because of the medical process. So I don't know if you've had anything like that where you've been, like, “gas-lit” about your experiences, or told, like, this isn't valid yet because you don't meet this lab test, even though your symptoms are severe.
X: I've seen a lot of doctors. I went through a period of my life where I stopped seeing doctors because I just couldn't bear them. And I've had a range of responses. Some doctors have been really kind and gentle and nice. Some have been absolutely awful. I've had doctors try and tell me, “It's not that bad. My other patients are worse than you. Do you need some help getting therapy?”. No, that's not going to fix my health problems. I'm depressed because of this, not because I need to do therapy. Yeah. So I don't know if I experienced medical trauma, but I've definitely experienced some very challenging conversations with doctors and also experiences trying to get the doctor to take you seriously. Even when you go to the doctor, you're kind of quite British. You don't want to overplay it and be like, “I'm so miserable I can't leave the house”. You'll be like, “oh, it's a bit difficult”. But in your head, you're like, “I'm so miserable I can't leave the house. Please help me.”
LC: You have to ham it up.
X: I know. And that's hard to do, right? Because I don't know, I think maybe that's part of my coping mechanism, not to admit to
myself or people how awful it is.
LC: Exactly. I think that's exactly it. And actually, I was just waiting for my rheumatology appointment. It kept on being delayed. Kept on being delayed. And I started getting my nails done at a new place and the guy there who runs the nail place has lupus. And we were having a chat, and he was like, “No, you need to tell them your leg’s about to fall off. You need to tell them you're about to die!”. He gave me all this advice. And if I hadn't met him, I don't think I'd be in the position of having the care I have now. And it's just because he said he wouldn't do my nails unless I called all these people and did it all. And then when I came back and said I did it, he was like, okay, I'll tell you what to do next.
X: I mean, I had a bit of a difficult time recently. I've been switched to a different medication, and it was taking a really long time to come through. I spoke to my doctor on the phone, and she said, “Are you on your new drug?” And I was like, “no”. She was like, “Okay, why is that?” And I was like, “yeah, I’m finding it a bit difficult, I'm not too happy”. And I got a copy of the letter she sent to the GP and it was like, “the patient is distressed”. And I thought, “yeah, the patient is really f***ing distressed, the patient's in extreme distress”.
LC: So just one question with your psoriasis, do you have symptoms that aren't skin based? I know there's psoriatic arthritis and things like that. Have you suffered from that or has it just been on the skin?
X: I've never suffered with that as far as I'm aware. So fortunately for me, so far, it's just been the outward effect. But obviously, that has had a significant impact on my kind of mental well-being and I think my ability to just live probably a normal life at times, not consistently since I was five years old. It’s ebbed and flowed.
LC: I mean, that's definitely the nature of my condition. I've been ill with this thing for a year, it ebbs and flows, it flares, it goes down, and the idea of having it constantly as bad as it could be, even with medication is too much. It's shit, but perhaps one okay part is that it comes and goes because if it didn't stop, that would be unbearable.
X: Yeah. A lot of people who have psoriasis do go into periods of remission. I have to say I never had a significant period of remission in my entire life, but maybe that's not quite true. I think when I started taking Methotrexate, which is the drug I was taking, I did have about five years where it was pretty good and it was at a level, there's a level that I can bear. And then I caught COVID and it just caused this like, absolutely catastrophic flare-up and the worst it's been ever since I was first diagnosed. So I've never experienced full remission. That to me is a bit like “people have that?”, but yeah, as you say, it is, it's just like the ups and downs. It's better, it's worse.
LC: For your flares, you said COVID was a trigger for your last one. Is there anything else you notice as a trigger for your flares?
X: Any kind of illness or virus especially to do with my throat really makes me flare up. It used to be that I knew I was getting sick because my skin would magically get much better and then much worse. That doesn't seem to happen so much anymore. I don't know why, but I've had this problem for so long . . . it's changed slightly, and become more tricky as time has gone by. But, yeah, when I had COVID that was really catastrophic. Some people with psoriasis have very itchy skin, and I've never really had particularly itchy skin, but this was. It was, like, red welts, on my face and, around my hairline. My arms were bright red from my elbows to my wrists. My legs were covered, my back was covered. It's just, like, absolutely everywhere and burning and itchy. And I just used to sometimes go to bed early, like 7:30. Slather myself with moisturiser because it was the only thing that would help me just lie in bed.
LC: Sleeping is a big issue with autoimmune conditions, the sort of things that cause you pain or discomfort, it means you can never really be at peace in your body. So I really feel you on that because I've definitely had flares where every part of my body has been red and itchy and burning and in pain and you're sleeping in bed with your partner and you're thrashing about or even moving just a little bit every minute, it is the most uncomfortable. I'm so sorry that you've had to go through that.
X: Actually, what you said about being at peace in your own body, that kind of encapsulates the whole thing when you're not at peace in your own body. And there are lots of people that feel like that, it's not just people with autoimmune problems, people with eating disorders, and people challenged around their gender identity. This idea that you're not at peace in your own body and you don't really have control over your body is really unsettling. And I always think in my head the only way to describe it to people when I have a bad flare-up is I literally want to crawl out of my own skin. I wish I could just clamber out of my own skin and flop out somewhere else.
LC: Bring on the Metaverse, when we’re just avatars where we can just go somewhere else and leave the corporeal form behind. I'm really sorry about that, though. With skin stuff, this is something that I think is really unhealthy, but is definitely a part of my experience, is the checking, for example, every time you have a shower, you have a bath, just looking down and being like, what's new today? I would love not to look at my body like that and instead to be just taking care of my body instead of being so suspicious of it. That's not healthy. That's not a way to live, to always be a bit scared of looking at your own body.
X: There's a lot of that when it's really bad, every morning, you take stock. Is anything better? Is anything worse? And then the feeling when something is worse of intense doom. It's really hard not to fixate on it. And I do remember being a teenager and watching TV or seeing adverts and there'd be all these people running around with clear skin, and it was like I was watching aliens in comparison to what I looked like.
LC: What do you do to cope with your symptoms? Physically? Or mentally apart from medication.
X: I hide.
LC: Join the club.
X: There were quite a few years in my life where I used to be quite obsessive, I would check the weather forecast for the summer and if it was going to be like 30 degrees, I would be in an out-and-out panic. I've made so many excuses to people when they ask something like, “let’s go on holiday”. And I'm like: “Oh, no, I can't. Whatever excuse, blah, blah”. I just cover up. I cover my arms and legs. If it's really bad. I just don’t even step out of the house. And the other way I hide is I just go to bed early and get under the covers, I'm a big escapist. So I love reading books and playing video games. And I find that just being fully immersed in another fictional world really comforts me and helps.
LC: That is real self-care. In something I wrote previously, I went and traced the meaning of autoimmune. Immune comes from Latin, immunis, where to be immune meant you were exempt from service, exempt from your duties to the polis, and that you didn't have to take part in society. So autoimmune literally means to make yourself not part of society.
X: That's literally what I do.
LC: Exactly. So you're fulfilling the brief of your disease and I definitely feel like that too, especially with the skin stuff. But as Claus said, with her GI issues, she sometimes won’t leave the house. There is a thread with autoimmunity that it makes you not able to be part of society.
X: Yes, there's a writer, John Updike, who had quite severe psoriasis. He wrote about being stuck in the house or stuck in New York or stuck indoors and called it an awful torment and no-one could understand. The hiding is a big one. It helps to have a partner that knows and is understanding, obviously. But then I would never be able to be in a serious relationship with anyone that wasn't kind or couldn't empathise with the situation.
LC: Yeah, but it is also hard because, for me, my partner works in hospitality and if I drink, I get a flare. He's a sommelier. And if I eat gluten at the moment, I flare. So great, I can't eat anywhere or drink anything, you have to make so many allowances for this illness and because he loves me, he's happy to do that, but at the same time, it's just another mental burden on you. Obviously, that person is supportive, but there's no way they don't think a little bit like, “great, we're not going out today.” And that mental burden is just another thing weighing you down along with your illness, it’s tricky.
X: But also there's the projecting into the future, I've got to think: “what's coming up? How am I going to handle this when I’ve got this hospital appointment? What's going to happen if this drug stops working? Then what will be the next thing? What if the NHS collapses? How will I pay for these things? What's going to happen?” I mean, there's a lot of mental planning and that is that mental burden that's really hard to do.
LC: Has your ability to cope improved over time? Has it become easier?
X: This is a bit controversial.
LC: Are you going to say no?
X: I'm just trying to think what the really honest answer is. I don't want to be bleak.
LC: Be bleak, be bleak. This is the space for it.
X: I've had this a long time. With body positivity, which I really love, there’s lots of acceptance of people's varying appearances. And I would love to be able to take that and be like: “Oh, I don't give a f*** if people look at my weird scaley arms, that's their problem, not mine. I'm going to run around the park in my bikini”, I would love to have got to that point, but the truth is, I haven't. I'm not sure that I can. Maybe because it's been so long, I think my ability to cope with it . . I've become a lot more kind of stoic and more philosophical, for sure. But I think a true success story would be if I was like, “Look, Lucy, I've got this hideous skin condition. But you know what? I don't give a f***. I'm quite happy to go out and show it off to people, and if they say nasty things like f*** them” . . . but I haven't got there.
LC: Really one of the fundamentals of what I want to do with this space is to combat toxic positivity and the guilt that comes with not being able to be a hero. The not just surviving but thriving narrative literally drives me crazy because it's like, that's a lot to ask of someone and it's a lot to ask of yourself. And if you fail yourself, it's just one more thing to feel bad about.
X: Yeah. Yes, that's a good point.
LC: I think the point of Moon Face is like that scene from A Single Man, the Tom Ford movie with Colin Firth. In the movie, after his partner dies and he’s looking in the mirror and he says to himself: “Just get through the goddamn day.” That force is what I want Moon Face to be. Just how do you just get through the goddamn day? Not how do I thrive, not survive. Just get through the goddamn day. Making it one per cent easier because when someone reads this they'll think “I'm not alone in that I don't want to be in a bikini when I feel incredibly self-conscious and feel like I can't shrug off that person staring at me. I'm not alone” Fair dues, I want to stay at home or, wear long sleeves. We're in it together. We're not all just, like, hustling through life together. F*** that.
LC: Have you tried anything to lessen your symptoms? And have you gone down the rabbit holes of various detoxes, supplements, meditations, Wim Hof, acupuncture?
X: What haven't I tried?
LC: There we go.
X: I tried everything when I was a kid. I had light treatment. It was quite successful. They give you UVB in, like, a lightbox. My mum took me to, don't laugh, to a faith healer when I was very young.
LC: I'm not going to laugh. I took myself to applied kinesiology.
X: When I was really young, I used to get some of this coal tar ointment, which was absolutely disgusting, it stunk, it was thick and vile, and I used to put it on every night. And then pyjamas over the top. I have seen a nutritionist which actually really helped for some time, but the diet you have to do can be extremely restrictive. I'm not sure it's 100% healthy. Supplements also helped me for time, but it's hard to maintain that. Acupuncture, tried that, didn’t work. Chinese medicine, that didn't work. I took methotrexate for about eight years and then the most recent thing that's happened is I’ve been switched onto a biologic, which has worked some kind of wild magic on me.
LC: That makes me so happy. And again, it's that sort of thing that's important, knowing there's hope, knowing that there are biologics that do work if you go up the ladder. That makes me so happy for you.
X: I don't know if this helps with your sense of perspective. Biologics started to be talked about as a treatment for psoriasis and autoimmune problems when I was about 15 and I was desperate to get put on them, I begged my doctor and she absolutely refused. “You don't have long-term consequences, blah, blah, blah.” Anyway, now I'm 35. So 20 years later, they're finally being subscribed more broadly. And the nurse that came to see me to do my injection training used to nurse people on an acute ward where people would go for infusions because they were having major skin flare-ups and were basically like, incapacitated, and he was saying, “They're the most amazing drugs, they're incredible. Eventually, doctors won’t bother prescribing methotrexate and this other crap. They will just put people straight on these biologics”. There are loads of new ones now. When one fails, you get put on another one and it's progressing, like, rapidly. So there is hope. And beyond biologics, there's also gene therapy and there have been lots of really promising cases of people with autoimmune conditions being basically cured or put into permanent remission by that.
X: So there is hope. Don't lose hope.
LC: Just the fact that I've had improvement on methotrexate, for now, is good. And I'm sure once they discover what the hell is wrong with me there may be the chance of going on a biologic, I don't know if you can go on a biologic without a diagnosis because they target certain things. Were you ever given prednisone for your psoriasis?
X: No, I was never offered steroids I saw a lot of doctors when I was a teenager and a child in my twenties. I had had enough and I just had this massive break and I controlled it really successfully with supplements and diet. Then it all started to spiral out of control. So I think I missed the period where they were maybe prescribing a lot of steroids and because methotrexate worked for me, I avoided that. I've heard that it has pretty difficult side effects, to say the least.
LC: Nothing would have prepared me for the wonders of steroids. But what is so scary is they f***ing work. Like, they work so well that it is just terrifying.
X: What kind of side effects do you experience?
LC: Okay, so on the dose I'm on now, it's nothing. I've got a bit of water retention. I'm on 5 milligrams. You could take this for a while. When I was on 40 milligrams, oi vey, I'd go to bed, I'd wake up 3 hours or 4 hours later and I wouldn't be able to get back to sleep. It gave me the worst insomnia. I've put on a stone since I've been on it, and I've had a really stable body weight for years. I had a really good relationship with my body and it's tested that. I was so hungry. Constantly hungry. Also, you see this like hairband, on prednisone on 40 milligrams, it would leave a bruise because that's how sensitive it makes your skin. I would wear leggings and I would have bruises of the leggings from the waistband and seams. It's terrible. But then you're like, I haven't got a headache, I haven't got joint pain, my skin is fine. But you're kind of like a bloated hungry zombie.
LC: Do you think being ill has taught you anything that has helped with other parts of your life not affected by your illness?
X: I think it's given me deep reserves of endurance and empathy for other people. But also I think it's made me realise the thing that I probably value most in anyone that's like a friend or in a relationship is just kindness, which I feel is an extremely undervalued quality. I feel like I can tell when I meet people like, are you a kind person? If I told you I had this problem, could you deal with it? Would you judge me? And if you did, then probably we wouldn't be friends. Does that make sense? I don't mean that in my own judgmental way.
LC: No, but I think even if you did, that would be fair.
X: But yeah, I think I've got extremely hardy. I think as well, one of the ways I kind of made myself feel better over the years was thinking: “Okay, well, look, this is quite shit. There are a lot of other people that have things that are way shitter than this, in life you're going to get dealt with shitty hands. And your shitty hands is a nasty skin condition. I didn't get cancer when I was a teenager or find out I had a brain tumour or . . .” do you know what I mean? Like, things could be worse. It's such a horrible British way of thinking about it. I know it could be worse, couldn't it?
LC: I definitely feel like that works in comparison to other people. But I wrote a bit about how I used to do that with myself, that I'd be like, oh, well, it's been worse than this. But also with relativism like that, sometimes that works. And sometimes, I think it's just finding the right tool for the right job. All of the chronic illness stuff is like different tools for different days. That one sometimes can be helpful like getting out of bed, psyching yourself up, telling yourself that other people have it worse. “I'm going to do this thing. I'm going on my run.” But some days you just need to be like, this sucks, and that's fine. Or if you say: “Oh, I felt worse than this before”, then I think the little child part of you is like: “Well, I'm still hurting.” It doesn't help, I'm going quite woo here, but there's always a part of you that just wants you or someone else to be like: “This f***ing sucks”. But also the part of you that needs to get through the goddam day needs to know that other people are going through worse. It's whatever fits the current moment. It's hard. What do you think causes autoimmune illnesses?
X: God, I don't know. I know that they're rising in number everywhere. I know that some people have suggested that certain countries have much lower levels of autoimmune disorder, which is sometimes where the kind of diet protocol comes from. So I think Japan has very low levels of it and that's been tied to diet, but I honestly don't know. More and more people have them and they seem to be weirder and less understood than ever before. Right?
X: What do you think it is?
LC: I think it's a genetic predisposition and environmental triggers. My mom had lupus at my age, so I'm like following the same fun track, but I think it's definitely that you've got a genetic predisposition and then environmental triggers. So a virus or for me, I feel like it was stress, actually, and probably like three vaccines. Love the vaccine. If you're on immunosuppressants, you want everyone to have the vaccine, the thing that they think I have as one of my things, vasculitis, can be triggered by vaccines. So it's like you want everyone to be on the vaccine, but the vaccine might actually cause you to be the sort of person that needs everyone to have the vaccine because you would be immunocompromised. I think it's perfect storms. I think it's a genetic predisposition with a perfect storm of other factors. I don't think there's one thing, it's just what lights the match, what sparks the fire, I think is different for each person. But I think having a genetic predisposition is probably important.
X: It's so interesting how stuff is linked though, isn't it? Because people with psoriasis might go on to develop psoriatic arthritis, which is kind of a bit like sort of rheumatoid arthritis. Similar drugs. In fact, a lot is the same drugs. Right now I feel like we're on the cusp of understanding, what is this, what's the kernel of this thing that's making it happen? I really hope we get there soon.
LC: I mean, what they said to me is I've either got Still’s disease, which is very rare, plus some other random autoimmune condition, because it doesn't fit all my symptoms at all, or I've got something which is developing, it could be lupus. “We've just got to see what happens”.
X: Yeah, that's very hard. I think, not knowing in that sense, I've always known what I've got and that there's no cure for it. But not knowing what you've got, it must be really scary,
LC: Whatever I've got, you treat it the same. It's just the prognosis that is different. Because that's the thing. Not knowing what's going to happen is really scary. Every week something new happens, and I'm like: “We've never had that before”. And it's like it's evolving like a monster, the details being filled in in a picture. And that's why I do the body checking. It's like I literally have no idea what might come. I've got a purple ring around my calf. What's that from? It's just things like that every day. You have to laugh because otherwise I'd be terrified to have a bath and look at what's going on.
X: I mean, it sounds like you're kind of in the storm of things. I guess you just have to hope that the other side of that storm is a bit calmer.
LC: I have stopped, for now, thinking I'm going to get better, because that's also quite toxic, I needed just at least a break from thinking that. Maybe I will again. But I can't constantly be like, this will be gone. This will be gone.
LC: If you could give your younger self a care package to help them understand and possibly get through this journey with autoimmunity, what would be in it? Video games?
X: A physical care package?
LC: Yeah, just like things, you can put advice in it. You can put the books that have helped or the movies that you watch on repeat on a shit day.
X: I would put in my favourite books. Comfort reads, the most escapest book. So I love the Earthsea books. The books are amazing. I would put in some games, some consoles. Or I would put in a lot of, again, don't judge. A lot of series of Star Trek. The older Star Trek series that shows this utopian world. And you just have to think, my God, if I was transported into that universe, I would either A, be cured or B, no one would care. Those would be the things. I feel like actually what would have helped me the most is not the physical stuff. It would have been if my parents or someone could have somehow given me the confidence to be like: “It doesn't matter what these people think. Wear your skirt, wear your t-shirt, f*** them, it's fine.” But, you know, body positively didn't exist then. That's a new thing.
LC: But that's really profound. Like you've given yourself a bit of comfort and that's what you needed to hear at that time. But parents have no idea how to deal with a sick kid.
X: Yeah, they just wouldn't of said that. But yeah, I feel like I wish someone could have just been like: “It's okay to look a bit weird in public. People are going to look just ignore them.” That's hard to learn in your thirties. I think that would have been easier to learn when I was like five or nine or ten.
LC: I think that's a great note to end on because you've basically sent that message. If anyone's young or an adolescent and reads it, that's the advice they're going to take.