Moon Face Talks are interviews where I explore the experiences of people affected by Autoimmune and chronic illnesses. As I’ve written previously, it’s easy to get lost researching and trawling the internet for information about autoimmunity, Moon Face Talks highlight what it's like to live with a chronic illness and seeks to share knowledge and a sense of community with others experiencing similar conditions.
To start the series I interviewed Nicholas (Claus) Hedman, Claus and I met at art school in Barcelona and she has been a constant friend. Claus is an artist and student originally from Sweden living in the Netherlands. Claus was diagnosed with Coeliac disease as a child and went on to develop PCOS and Microscopic Colitis. In this talk, we discussed what it's like living in the grey, hallucinogenics, the boundary between restrictive eating for symptom management and disordered eating and the scary recesses of the internet and wellness culture.
LC: What were the first symptoms of your autoimmune disease?
CH: Gastrointestinal, I had increasing problems with reactions to foods, diarrhoea, bloating, and stomach pains, and that slowly progressed and got worse and worse until I couldn't even drink a glass of water without having the toilet next to me.
LC: How old were you at the time?
CH: I was sixteen when it started and it took another two years to get diagnosed properly.
LC: What was going on in your life at the time when your symptoms started?
CH: I had bulimia going on from thirteen . . . fourteen, I don't think that's necessarily the trigger, but it's obviously not good for your digestive system, for my disease in particular the use of NSAIDs and antidepressants have been shown to be a trigger, and I was put on a lot of antidepressants, trying them out, and because of the bulimia I had a lot of problems with acid-reflux so I got prescribed Omeprazole. So I had this whole cocktail of things that could trigger this disease, and I think the final push was when I went to South Africa, and the host family I was with, didn’t believe in Gluten Intolerance and so they just gave me food with gluten in it, that was just a recipe for a disaster, so coming back from South Africa, it was just chaos, that's when it started.
LC: What was the process of getting a diagnosis like?
CH: It was difficult, I had to really fight for it. So you start off with your GP right, and I remember the GP that I went to he essentially felt around on my tummy and told me, I’m just an anxious woman, I had to really fight him and go to another GP to get a referral to a specialist, but once I got to the specialist, I got the same spiel, and at that time I weighed very little because I couldn't keep down food, so I was told I was just anorexic and had a fear of food and it was all in my head, and I don't think I'm the only women to experience this dismissal from doctors, and it's really frustrating, it truly is, I think if you go in as a man, you are much more likely to be taken seriously.
LC: I’ve spoken about the autoimmune neurological condition I had in my twenties, and how when you have an illness that can’t be measured without loads of tests, that they can’t see, if you’re anxious, distressed and a woman, it's much easier to say its to do with anxiety, and when I was sick with this condition I was told it was just anxiety, but there's also a connection between stress and having an autoimmune condition, so having anxiety doesn't rule out an autoimmune condition in fact it could be a sign that you're predisposed to having one.
CH: I feel like I hear this from a lot of women, I would be interested to hear about a man's experience of this because even when I saw the specialist, my mother had to go on a rampage because by then it had been a year of having an untreated autoimmune disease, your exhausted, your whole body is running on fumes, I had to cry in front of my doctor, and my mother had to go on a rant, and I eventually met the chief of staff of that department and he was the one to finally get me a biopsy which proved that I have this autoimmune condition and just getting that was so validating, having it in black and white, it was such a relief, it's a chronic disease but still it's validating to know you were right and you know your body and you're not just making things up.
LC: I have felt that way so many times on this journey, would you say you have medical trauma, trauma from the medical experience?
CH: Yeah, because still to this day I have such a distrust for these doctors and I feel like its a continuous battle to have my experience of this disease validated and have my symptoms taken seriously, and I also feel like it doesn't have to be a lot because even with the best doctor I had, the chief of staff, it's not like the outcome was very different, I'm still on the same medication, he was just very sympathetic and understanding and walked me through the possibilities, which are very few, but to have your experience validated makes such a huge difference.
LC: What medications do you take for your condition?
CH: I'm on Entocort, which is a steroid, but more localised than Prednisone, so I don't have as many side effects, which is nice. I think because I had a very aggressive version of my disease they didn’t know what to do so they kept me on the steroids, you’re not meant to be on it too long, I’ve been on it for twelve years.
LC: Bloody hell . . . twelve years.
CH: So the problem I have now is my body is dependent on it, so even though my stomach is manageable as soon as I cut down on my medication my body isn’t producing the cortisol it needs.
LC: It’s so funny because I remember you always being like, “‘I’m taking 1 pill at the moment, now I’m on 1 and 1/4, now I’m on x pills”, and I thought what is she talking about, and now my whole life is shaving down pills, seeing how little I can be on without being sick, steroids are a huge paradox for being the only thing that works but at the same time once your on them its a cycle and you can’t get out of it.
LC: Have you tried other immunosuppressive agents, what else have you tried?
CH: It's mostly been that, I did try another immunosuppressive but that didn't work at all, and the next step was a very low dose of chemotherapy essentially to suppress my immune system, but I felt I wasn't ready to take that step and that felt a lot more serious, and that's when I started looking into diets and alternative routes, because you have this distrust for doctors, you feel like there has to be something else, it can't just be chemo or cortisone, and so you end up trying everything, and now I have found a balance where I am stable where I am, and I can attempt to lower my medication very, very slowing
LC: What things have you found that helped?
CH: The diet is the big one, FODMAPs specifically, it's hell to stick to and it’s hell to live with but it really worked, finding the best probiotics on the market has made a huge difference, the probiotics have become necessary for me to be stable with my condition but they are not included on my insurance, even though they were invented for medical conditions such as mine, it's the only one with this much scientific evidence behind it, it's for me, I'm the target group, but it's still not covered by insurance and it's really expensive. I'm lucky enough that I can afford to take it every day but so many people can not. Having an autoimmune disease is such an investment of time, energy and money, and if you don't have that you're screwed, and that will cause more stress which will cause you to flare more, I also realise that having experimented and having found stability, I have a lot of gratitude for the healthcare system we have in Europe, and the time that I have and the privilege that I have in being able to try all these alternative and holistic approaches.
LC: A couple of weeks ago I went to see a “witch doctor” my friend had recommended and he said I had “Candida”, and I was so disappointed I really hoped he was going to “medical medium” me and point to some trauma or food intolerance and everything would be solved, I at least wanted a less 00s holistic diagnosis, you have to be so careful of people taking advantage of you, that's what I want Moon Face to be about, talking about what is evidence-based, what is holistic but can't hurt you, there's a whole cliff of wellness where you could become obsessed with your illness and be very vulnerable to being taken advantage of.
CH: Especially when you're not validated by the healthcare system, you're more vulnerable to being taken advantage of. People with my disease, because there have been studies which show faecal transplants work, people get desperate. . . there are these youtube videos of people in their kitchen with their baking stuff, mixing their family’s poop together because people are so desperate.
LC: Do you have periods of flare and remission? What are your triggers for flares?
CH: Where I am now, it's mostly food, if you eat something, you'll just feel bad for a day, if you’re unlucky it will be a trigger and feel bad for a month, so it's a constant weighing of pros and cons, so for me if I want to try something new, I make sure I have a day off, or a day I can cancel . . . it's exhausting doing this, it's just a constant awareness of what I put into my body and when.
LC: For me, I will have a stressful period or have a lack of sleep I will think I have gotten away with it, but then after a while when I’m back in my normal routine I will have a flare, buts it is often not instant, its a delayed reaction. Do you find stress and lack of sleep trigger you?
CH: When it comes to stress definitely, with this project I’m currently working on, I kept pushing and pushing and pushing, and I was like it's okay it's still fine, it's still fine, but all of sudden it’s instant, and my whole body went into a little bit of chaos, but that also forces you to relax, it's your body’s way of telling you to slow down, but the problem is in today's society you're not meant to slow down and take care of yourself you're meant to be on it 24/7, when you have an autoimmune disease you end up suffering trying to keep up the society.
LC: Have you found anything to help with stress?
CH: I’m not sure there's necessarily something I've tried in particular for stress, but you reach a point where you have to evaluate your life, where you focus on what you need, so more time to yourself, fewer nights out, focusing more on mindfulness and yoga, treating myself to a massage once in a while to slow the body down a little, there's been a conscious effort but nothing specifically.
LC: Do you think your ayahuasca experiences have helped your autoimmune condition? I know that vomming in a forest doesn't sound like it would help your stomach but at the same time, has it helped at all because it helped with stress?
CH: Doing the ayahuasca felt like skipping forward ten years in therapy, so I felt more at ease, and I've been building on myself from that endpoint and that has led to me having a much calmer life and a much calmer self, where I am stable, so it's hard to say if it helped.
LC: So maybe it has helped indirectly? But your advice isn't to take ayahuasca or mushrooms and you’ll cure your autoimmune disease . . .
CH: No. I wish. I think it got me to accept it, accept my body as it is, work with my body and not against it, to stop waiting for it to become better, live in the now as it is, and not take it for granted.
LC: What coping mechanisms, healthy or unhealthy, do you use to deal with your symptoms?
CH: So the healthy one would be to slow down and allow myself to not feel shame for not being productive. But if you have to be productive because society demands it, it is just to not eat, if I don't eat, there's less to irritate my insides.
LC: I relate to that, but being on Prednisone, I'm so hungry, so it's impossible to not eat all the time, but everyone is always telling me: “Have you tried fasting?” and I bet if I didn't eat, I would have fewer reactions because I wouldn't be constantly provoking my body, but it's not sustainable, also, to say to any young woman, have you tried not eating? It’s dangerous and not a long-term solution for an autoimmune condition.
CH: Not at all, your body needs energy, you’re inflamed, you need more energy to manage your body, it's really hard, this whole thing of parcelling food and your reactions together, for both of us having had disordered eating before, it feels like disordered eating but justified by a medical condition, which feels really dangerous.
LC: Especially with triggers, because of the work I've done with intuitive eating I feel like I'm not tumbling into the abyss with this mindset. But I have friends who have stomach issues and say, I can't eat this, I can't eat that, and it's hard not to wonder are you just scared of eating this or that? For me, it took so long for me to cut out food triggers and to be honest I keep eating them despite them giving me flares, because I don't want to cut something out, and end up hurting myself in one way to avoid hurting myself in another, I think the line between restrictive eating to take care of yourself and restrictive eating for control can be hard to maintain.
CH: I’ve definitely been there because of my fear of food . . I wouldn't touch a lot of food, I had my safe foods and I wouldn't try anything else and I was scared of anything else, and you wonder to what point is my reaction now psychological, and you end up feeling like you are gaslighting yourself one way or another, that's why I started doing the process that if I have a day off I can try new foods.
LC: I'm flashing back to us living in New York for a month together, and just only having Bustelo coffee, a bag of tortilla chips and occasionally guacamole in the apartment, and how much I am in a different mindset now, and how I kept thinking then: “Let's eat something more fun, Claus is just eating tortilla chips all day”, I now so understand how it was the most fundamental thing to have a bag of tortilla chips there the whole time, it's so hard when your not in it to understand. I think a big part of any chronic illness, is that people who don't have a chronic illness don't get it, but you feel like saying to the people who don’t get it, this is my whole world you should fucking get it.
CH: If you haven't had a chronic illness you don't know what true exhaustion really is, people don't understand how you need to rest after a single activity, how everything is just draining.
LC: Has fatigue been a big part of your illness?
CH: If I'm in a flare then definitely, your body is focusing its energy on trying to heal you, so yeah, that's definitely part of it.
LC: With your illness, they don't know what causes it, how does that feel?
CH: It's super frustrating, an increasing amount of people are getting it, it's not a sexy disease, your shitting yourself, good for you, we don't care, we don't want to put money into it. They haven't figured out the autoimmune part of this chronic illness, there are two camps, one saying your body is attacking yourself because it is in overdrive, and the other camp, says you've been triggered by something and your immune system isn't strong enough to fight it off, so if you are on immunosuppressives you're ensuring the illness is chronic.
LC: There isn't really a sexy autoimmune disease, autoimmune diseases are shitting yourself, being swollen, covered in rashes, it can be very isolating, when your body attacks you it makes you not want to be part of society because you're in the loo or covered in a rash.
CH: When I got it I was very young, it mattered more at that point, I wasn’t saying to people “Hi, I shit myself”, but actually I've been lucky enough to not shit myself . . . it's been close but never happened.
LC: That is very impressive.
CH: I actually have a question for you. For me I'm not on the pill, so does your menstrual cycle affect your condition?
LC: I’ve been taking the pill for five years because I found it so effective at controlling my mood, so there's no effect I can see of my disease on my menstruation, but I do actually feel a bit jealous because if I had a menstrual cycle I would have another reading of my health.
CH: So I went to see one doctor who said there are two different types of microscopic colitis, and one is more common in menopausal women, so he thought it may be helpful to balance my hormones because I have PCOS as well, I thought that was interesting, and I noticed when I was on oestrogen pill my symptoms got worse but on the progesterone one I had cysts from my PCOS, so I have focused on trying to regulate my hormone through food and through supplements, which has helped immensely with stabilising myself, it was another puzzle piece. Again, if you are a man you have a much more stable environment to understand your illness.
LC: I went down a whole rabbit hole of thinking I had estrogen dominance, I convinced myself I had it, but when I researched it, it wasn't a real thing. But what you said about hormones being a puzzle piece, I think when people are sick, they can become obsessed with the cause and they are like, it's all diet, it's all stress, it's all a parasite, it's all the vaccine. But with health and with autoimmune conditions, it's a way of having control, because you have one thing to focus on and one thing to blame. But my belief is that my autoimmune condition was the result of the perfect storm of so many different factors that came together. Long-term trauma, short-term trauma, stress, diet, not sleeping, Covid, the lockdown, lots of things that pushed me over the edge, and it's going to be lots of things that put me back together, but it's easier to focus on one thing, one cure, but that's a hard thing to accept, there are puzzle pieces in both the cure and cause.
CH: Going back to the ayahuasca, the probiotics, the hormones, and working on yourself, they are all puzzle pieces. For me, freelancing was a big part of managing my illness because I couldn't stick to a normal schedule and I felt a lot of shame and pressure because when I was at my worst I had to really fight to get compensation for not being able to work, it was humiliating and it took ages, so that allowed me to manage my work around my illness.
LC: Do you think being ill taught you anything? Have you gained insight from your illness?
CH: Yeah, I think being forced to get to know yourself and your own body. Because otherwise you are forced to stay in this dualist mindset of body and mind.
LC: About dualism, being chronically ill is like living in the grey area of life, it makes you realise that there’s not just healthy and unhealthy, crazy or sane, it's a spectrum, you realise that when you experience a swing from side to side.
LC: What do you think causes autoimmune illness?
CH: Like you said a perfect storm, it's hard to pinpoint something, that's why recovering is so hard.
LC: Before I got sick I read this book by Dr Gabor Maté, previously I had read his book on addiction which really helped me understand my Dad who has a heroin addiction, he wrote this book on chronic illness called When The Body Says No, where he talks about what causes chronic illness. He believes in a relationship between chronic illness and childhood trauma, I don't think you have childhood trauma and then you get an autoimmune illness, I think for me my mum had Lupus, so I'm predisposed to having an autoimmune disorder, my Dad being a junkie led to behaviours and mindsets which led me to be chronically stressed, which made me vulnerable to autoimmune illness, do you think there’s a link between trauma and illness?
CH: I also think that the book The Body Keeps the Score is relevant to how trauma is stored in the body. For me, being coeliac you are predisposed to colitis, and on top of that we have a lot of mental illness in my family and yeah, let's put it like this, we have been through my bad relationship, you and I together, and for a couple of years after I still kept in touch with this man, and I gaslit myself through my therapist and him, “It was all in my head, it was because I was borderline, not because he was emotionally abusive”, but every time he reached out to me, I would have a knot in my stomach, and I would have a reaction, a flare, and I can see how having years of reactions to different kinds of trauma and abuse have led to that concentrating in my gut, I think it's different in different bodies, where that reaction takes place.
LC: A part of your body was trying to protect you. I’ve had a new autoimmune flare every ten years since I was born. Every time I've felt very alone I've gotten sick, so someone will have to take care of me. I know we just need to make meaning out of things and have a feeling of understanding the universe, but that narrative makes sense to me. Having a chronic illness is the worst, but for both of us having an autoimmune illness has led to us having an understanding of ourselves, and what it is to be in the world, what we need as a person, some people don't reach that level of insight because their body doesn't feed back to them. It's not good or bad, it's just another way of being in a body, but it's our other.