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https://www.britishskinfoundation.org.uk/blog/skin-disease-and-the-impact-on-family Skin disease and the impact on family Andrew Collinson and his family discuss the impact of his severe eczema. This post contains references to a specific medication prescribed as part of a personal care plan. If you are struggling with eczema, please contact your GP and/or dermatologist as each person needs to be assessed on an individual basis. Andrew Collinson’s family provide an insight on the impact his chronic eczema has on the wider family At the British Skin Foundation, we know that skin conditions not only affect the patient, but also those around them. The impact skin disease can have on a person’s wider family is sometimes forgotten, but it’s important to recognise the supporting role of loved ones too. The lifelong impact of eczema Andrew's skin during a flare Andrew Collinson has lived with eczema since he was a baby. Finally at 30 years old he has found a treatment that works for him, Dupilumab, giving back some control over his skin after years of suffering. Andrew’s mum, Louise and his wife, Donna have offered their perspective of living with someone with a severe skin condition. With one in five children suffering from eczema, it’s one of the better known skin conditions. After experiencing eczema herself as a child, Louise initially thought that there would be an easy fix for Andrew’s skin. In fact, it was just the beginning of a long, emotional journey for Andrew and family. Nowadays we can search online and find self-help information very quickly, but when Andrew was a child, information was harder to find. Louise had to fight to get referrals to a dermatologist from the GP after attempting to control Andrew’s eczema with creams and bath oils alone failed. The time-consuming nature of a chronic skin condition After advocating for Andrew and his condition for years, Louise explains how time-consuming his care was, referring to it as a constant in their family life. He had brutal daily routines for washing and creaming which needed to be strictly adhered to. I needed to be vigilant with his skin, always looking for signs of infection, keeping his nails short, bathing him, using the correct washing powder, and changing his bedding regularly. Aside from the gruelling skin routines, Andrew’s mental health suffered greatly. Dealing with bullies and embarrassment on top of being tired and unwell took its toll. Simple pleasures and normal everyday activities for children were a challenge. Louise explains, ‘All aspects of our family life had to be considered with Andrew’s eczema in mind. Sleepovers were difficult for Andrew as he needed bedding washed with non-biological washing powder. He would often bleed on bedsheets at home so would be worried he would do this at his friend’s house. He couldn’t take part in school swimming lessons as he needed time to shower and cream down after.’ The impact even stretched to holidays and family days out. Louise continues, ‘We were unable to book a caravan holiday as there was no bath. If we went to the beach, we would take a big bottle of water mixed with his bath oils to wash him down and then apply his cream. It affected my mental health too because I could see the enormous impact it had on so many aspects of Andrew’s life.’ The emotional impact of eczema on everyone Andrew and Donna Whilst his Louise worried about Andrew, years later he also feels a sense of guilt for the impact his condition had on their family. His parents spent endless hours researching his condition and painstakingly caring for him. Even though it’s not his fault, the mental anguish Andrew feels is still there. With confidence at an all-time low as his friends began to date, Andrew describes his wife Donna’s interest in him as one of the biggest shocks of his life. Forever worrying he’d have a flare up and she would no longer find him attractive, Andrew needn’t have panicked as Donna supported him through some of his lowest moments. Even though they have been together a long time, dealing with the condition is still stressful. Donna explains, ‘It’s hard not to feel hopeless when treatment plans have failed, and you don’t know where to turn next. We try not to dwell in negativity and instead formulate a game plan to fight the next battle, but it can often be too overwhelming for us all.’ The endless toll of eczema Eczema on Andrew's face At times, the couple has felt isolated and lonely, missing out on larger group activities and travel opportunities due to worries about food, alcohol and washing facilities. Donna explains, ‘We both thrive in nature, so when we got married our dream was to climb to Everest Base Camp on our honeymoon. Sadly, the disruption to Andrew’s diet and various hygiene challenges made it a non-starter for us.’ It’s not just leisure and travel that’s affected. The pair likely won’t have children, partially due to concern of passing on severe eczema to their baby. Donna continues, ‘Eczema has been the theme tune of our whole relationship really. All events and moments are framed by it, either by the struggle, the strict routines, or even just by being grateful for the times his skin is clear and under control.’ Whilst there’s never a day that Andrew’s eczema is not mentioned or considered, his new medication has helped the couple feel more confident. Donna adds, ‘It’s not perfect but we’ve come a long way and I feel like a huge weight has been lifted from his shoulders.’ Andrew's skin is much better following treatment Andrew’s top tips for dealing with a chronic skin condition If it’s been a while since you visited a dermatologist, try again! New treatments and medications may have been approved since your last visit. If you aren’t happy with your doctor or dermatologist, try someone new – they may have a new perspective. Advocate for yourself. Don’t be afraid to explain exactly how much of an impact your skin condition has on your day-to-day life. Provide evidence! Arm yourself with photos, a diary of everything you’ve tried and been through. Express that it’s also your mental health suffering, as well as the physical effects. Go to appointments with a list of questions or discussion points so you don’t forget anything in the moment. Be kind to yourself and use your support network as needed. https://www.britishskinfoundation.org.uk/blog/skin-disease-and-the-impact-on-family

Over the last 3+ decades I’ve been constantly experimenting with ways to ease my symptoms. Some of these have been total nonsense but when you’re suffering you’ll try almost anything. There’s so many variables involved with skin conditions that it can be really hard to tell sometimes what is actually helping. I appreciate to some of you this will be very old news. I’ll probably go into more detail in the future but for now I thought I’d rattle off a few to see if there’s anything you think is worth trying: Compression This one has been a life saver for me during the times when the itch has been mind bending. Just standard New Balance etc sport compression sleeves work for me. Especially at night when I’ve got no distractions, it also helps when I’m trying to focus on something for work. Air conditioning Blasting the aircon on the way to work in the middle of winter so that you turn up sniffling and shivering is not ideal but it was worth it to me to calm my face down slightly. I certainly believe that the cold can take the edge off of symptoms when things are red and angry. Diet and exercise Bit of an obvious one but there’s very little doubt in my mind that when I’m eating well it only helps my skin. The same with getting enough exercise. It’s so easy to feel completely broken down but doing all I can that’s within my control certainly helps my mental health. Mindfulness For the longest time I would just try to ignore and “march on” when I was struggling. I would see it as a battle and I had to keep my head down and keep moving forward. This often caused my mental health to become worse and worse. I now try to force myself to take 5 minutes to sit with it and observe how I’m feeling from an external perspective. It feels like before I was trying to bury my head in the sand and ignore it whereas now I acknowledge how I’m feeling and what I’m dealing with head on which feels much better psychologically. Keeping nails short The damage I can do from scratching when my nails aren’t cut short is shocking. Inversely when they are short it really takes a lot more conscious effort to do considerable damage. I cut my nails every week like clockwork and I’ve found this really helps. Routine It can often feel like the condition can dominate your life and having an extensive routine of medication and treatments can make this feel even more all consuming. It can become exhausting fitting in all the different medications etc and I’ve found the best way to reduce this impact on my life is to make it so routine/efficient that you can do it on autopilot. As an example I have a load of tablets I have to take, I take them at the same time every morning and have them all in a pillbox to make it as quick and easy as possible. I also have what I need dotted around the house exactly where I need it. Get it done and out the way as quickly and effortlessly as possible so it doesn’t become overwhelming and you don’t have to deal with any decision fatigue. Flexible working This is a big one but not a simple fix, it was something I was desperately working towards for 10 years. I’m in the hugely privileged position that I work from home and therefore have the luxury to not have to face the world if I don’t feel up to it. This rarely happens as it scares me getting into the cycle of not leaving the house but I know it’s there as an option if necessary, which is invaluable. This reassurance that I can hide away if I absolutely need to has had a profound effect on my mental health and I believe has paradoxically improved my skin. I know this isn’t an option for anyone but I do believe if you’re someone suffering you should consider it when choosing a career.

Large companies with the most reach are heavily tied down by regulation when it comes to promoting or even discussing treatments and medication. I therefore need to use my freedom in this sense to start directly discussing my own personal experiences with medications in case there’s anything you may not have heard of/tried. After a recent stretch of multiple flare ups I began my usual routine of desperately searching the internet for any kind of treatment which could offer a reprieve. It was then that I stumbled across a few Rosacea treatments, in particular Mirvaso. Over my lifetime I’ve been told by different specialists that I have Atopic Dermatitis, Eczema, Psoriasis, Rosacea etc so I was surprised that in my 31 years no one had ever offered me Mirvaso. Especially as it seems to be a fairly widely used medication with some people getting good results. It works by restricting the blood vessels in your face to allow less blood through thereby reducing redness. When I first tried it the results were miraculous, I hadn’t seen my face so clear in years. The most shocking thing was the speed in which it worked. Within half an hour my face went from this. To this It was staggering. I’ll admit along with the relief of my skin being clear and not being in pain one of my first thoughts was “WHY HAS NOONE SUGGESTED THIS TO ME BEFORE!”. Along with a nagging feeling that the answer for me is never this simple. I immediately jumped online and started reading anything and everything I could about Mirvaso. The same theme jumped through time and time again. That it’s an excellent tool in the toolbox for emergency use however it can wear off in the long term. Sure enough when used daily that’s exactly what it did for me. However, a bit of a side story; my Wife Donna is a very successful glass artist and was recently invited for an event as a guest artist to The Corning Museum of Glass in New York. You may be familiar with the museum if you’ve ever watched “Blown away” on Netflix which is essentially a Bake Off style show but with glass artists competing for a chance to win a place at the Corning Museum of Glass. It’s kind of like being a musician and being asked to play at Glastonbury! This was obviously a huge deal and I was so excited to share this moment/assist with the logistics of the day. Of course my skin decided to flare on the morning of the event, something which was incredibly daunting as I knew I would have to spend the day trying to make a good impression to all of Donna’s followers/important people at the museum. I also didn't want to put any more pressure on/distract Donna. Mirvaso significantly helped to calm my symptoms and enjoy what turned out to be an incredible day. I will forever be grateful for being able to be there and watch my Wife have her moment in the limelight. I can’t explain how surreal it was seeing a queue of people waiting to meet her and wanting photos/things signed! https://www.instagram.com/reel/C5Jh2B2Nm6O/?igsh=MWw0bXBjYjE0YzBycQ== So to summarise my experience with Mirvaso is that it wasn’t the cure but it is a very powerful short term tool, similar to prednisolone, Daktakort etc. While we wish these were all long term solutions, the psychological benefit of knowing we can fall back on these treatments when we so desperately need them is invaluable.

But with the hope that this will soon change All through my life I grew up with not only a lack of positive representation but exclusively negative representation. It felt like every villain/character who was intentionally designed to be disliked often looked a bit like me. This resulted in me fighting for my life to ignore and downplay my condition. To do all I could to not let anyone know or see who I really was. Which of course was impossible. I’d never really considered how much of an effect this had on me until recently. It’s just another contributing factor to the feeling of isolation growing up. I never saw people like me. I would have without a doubt benefitted from a role model to show me that it was possible to live a full and happy life. And that I didn’t need to believe all those around me who were making me feel worthless. This has started to change, representation is now a key societal issue and major corporations are getting involved. I’ve seen many people with vitiligo as an example involved in advertising campaigns. We’ve got to the stage where many people at least have a basic understanding of many conditions, such as autism, this needs to be the same with AD. Skin conditions affect around 900 million people worldwide, around 1 in 7, so it’s crucial society increases its level of understanding. Lack of education is what often causes these public humiliating moments where (often inadvertently) someone will comment or bring attention to what is a chronic condition. If people understand the depths that people are suffering both physically and psychologically hopefully they'll think twice before making the throwaway remark that cuts like a knife. This could create a world in which AD sufferers don’t have to spend their life walking around with their heads down, shoulders around their ears and anticipating the next comment. This is a big part of why this advocacy work has felt so liberating. I’m no longer hiding who I am or what I’m suffering with, I’m doing the opposite. As I’ve mentioned previously I’ve always struggled with thoughtlessness from others however bringing it to the forefront and making no attempt to dilute it has allowed others to see the reality. I’m very excited to be soon involved in helping Eczema Outreach Support who focus on helping children and young people along with their parents/carers. I’m certainly not the most exciting role model in the world and would love to be able to say I’m a fighter pilot or astronaut. I have however achieved things I am proud of; becoming a snowboarding instructor in Canada, married my beautiful wife, built and sold a business etc. To hear this from someone like me when I was younger would have been so beneficial. We should all continue to apply pressure and encourage businesses and governments to keep expanding representation as they are the ones who will ultimately move the needle.

(Spoiler alert) Other than if there’s another movie with Owen Wilson and a dog then I’m not watching it! I finally watched Wonder after years of pretending it didn’t exist as it felt far far too close to home. To briefly summarise for anyone that hasn’t seen it, it's the story of a boy (Auggie) with a facial disfigurement starting school with Julia Roberts and Owen wilson as Mum and Dad. It’s of course a net positive in terms of representation, education and encouraging a society with more empathy. Understandably being a hollywood movie there always has to be the inspiring happy ending, which in a way we all want to see but unfortunately often doesn’t reflect reality. Auggies home life felt very familiar, he’s surrounded by an incredibly warm, loving and supportive family. Having my tribe was vital for me growing up, from the tangible aspects of being taken to endless appointments etc to the more intangible feeling that my parents were fun, likeable, successful people and feeling proud to come from that family, both in relation to my close and extended family. I honestly cannot comprehend the strength of those living with a chronic visible condition who don’t have this support network. To have no one to make you feel that you are special and important must be incredibly difficult. The movie starts with the parents arguing as to whether Auggie should go to school or stay in homeschooling. I personally don’t believe there’s a right or wrong answer to this. There is certainly a benefit from the social aspect of school but I do believe there are instances (at least when I was growing up) where the cons significantly outweigh the pros. I think that spending all day every day somewhere that can strip you of all feelings of confidence and self worth can be something that is better to be avoided. It should be on a case by case basis but I do believe that the extremes of bullying and feelings of daily humiliation will have longer lasting negative consequences than missing out on the social skills that can be developed from school. I do think these social skills can be learnt in slightly more controlled environments (sports clubs etc). Again I’m not saying that every child with a visible condition should be homeschooled but I don't think anyone should see it as some sort of failure if homeschooling is the best option. I hope that nowadays kids are kinder and more empathetic as when I was there it was the law of the jungle. You did not show any element of weakness and you were constantly on alert to maintain your position and not become a target. Something some kids probably think about less than others didn’t but I was painfully aware I could be an easy target if I allowed myself to be. One of the characters in Wonder was Auggie’s friend Jack, at one point in the film Auggie hears him saying to the “popular kids” that if he looked like Auggie he would kill himself. Jack is then full of remorse and guilt when he realises that Auggie heard this. This resonated with me as there are a number of ways I acted in school that I’m ashamed of. I would certainly like to believe I was nowhere near the worst but in order to “maintain my position” and purely out of my own insecurity and cowardice there were times when I would put others down in an attempt to build myself up. I feel a lot of guilt and anger at myself for this. There’s also a part in the movie in which both Auggie and his sister experience a friend who all of a sudden does not want anything to do with them anymore. I experienced this a few times through my school life. I wasn’t cool to be around so after a while they would “upgrade” and move on. This is something I deeply struggled with and began cutting people out far too quickly so they didn't have the chance to do the same to me. I did like the way in which the film addressed how Auggie’s situation affected everyone around him too. This is certainly something everyone with/everyone around someone with chronic AD can relate to. I feel a sense of guilt and shame in how much hard work I must be. I remember my wife in her mid tw helping me apply bandages all over me and thinking this is not what a beautiful girl in her mid twenties should be spending her time doing. Through all the ups and downs Auggie is eventually accepted and celebrated by everyone and the movie ends with Auggie receiving a standing ovation by everyone in the school for his bravery. This is certainly not reality for so many and I would have preferred if they’d ended the movie on a positive note but without quite so much of a Hollywood ending. There is a lot of autism in my family and there was a BBC series a few years ago called “There She Goes” which is the true story of a family with a profoundly autistic daughter. The brutal reality of the situation is captured perfectly by this series and I think it’s something everyone should watch for a better understanding. While there’s still moments of positivity and triumph there’s no naivety in just how difficult life can be. Overall it’s an important step in the right direction but I believe the harsh realities could have been better represented to make those who are suffering feel more seen.

I thought it might be an idea to drop in and give an update on where I am in with my skin journey. So as I’ve mentioned previously after a year of miraculous results with Dupilumab those results began to fairly precipitously wear off. This resulted in almost a grieving period where I had to let go of the idea that I still had this “miracle cure”. This wasn’t easy, I have always lived in the hope that it would eventually get better and one day we would find the solution. I really thought for a while I was there and the pain and embarrassment was something I could put in my rear view mirror and could focus on overcoming the psychological impact. I then tried a different biologic called Tralokinumab. This came with an interesting challenge in it was the first medication in which I had to inject myself with a pre filled syringe (Dupilumab was a prefilled autoinjector). Despite having endless blood tests while taking methotrexate for example I’m still no good with needles. Mum says it was from an experience when I was very young, maybe 3 or 4 and when trying to do a blood test they took over 10 attempts and I’ve never been very keen since. When I say I’m not keen I mean cold sweat, racing heart, clammy hands and as soon as the needle goes in the world starts closing and I’m on a timer where I need to get outside in fresh air before I hit the floor. I remember telling a nurse that I was getting much better at them then a few minutes later waking up with my feet up on a chair, my head on a pillow and three nurses around me. The loading dose was 4 injections (which made me feel pretty pin cushiony) for the fourth one the nurse encouraged me to self administer with her supervision. She was very kind and patient as with a shaky hand I did my best attempt. Administering at home the first few times took a bit of mental strength, it took me holding the needle in one hand and staring at my thigh for half an hour before getting the courage to inject. However I quickly realised it was actually fairly painless. I’m quite grateful for this experience as it reassured me if necessary I am able to inject myself, potentially even daily if necessary. Unfortunately Tralokinumab is a slow acting medication, the trial period needing to be as much as 6 months. However around 2 months in I was suffering with no signs of improvement. I simply needed something to work quickly as my skin was out of control. I then switched to my first Jaks inhibitor: Anbrocitinib, this is in tablet form but does require regular blood testing. This is where I’m up to today, I’m currently around 2 months in and the effects seem to be very good on my body but my face is as always a complete warzone. I was back at Guys Hospital last week, on the journey in I've not felt that embarrassed in how I look for a long time. Although I was quietly glad my skin was in a reasonably bad way as I always think its valuable for the consultants to see it in that condition. We’ve decided on a new direction primarily involving constant application of sunscreen as my symptoms look like photosensitivity to the consultant. I’ve said it before but the care at Guys is second to none, if you feel in any way that you’re being dismissed please get yourself refereed there. I always feel listened to and like I’m in the very best hands. To be fair since putting on suncream constantly my skin has calmed down I’d say around 20% which is certainly the edge and a bit off. Which I really needed as I haven’t felt quite that low in a long time. It’s at this point that I start mentally collecting evidence that this is what I’ve been looking for. For example my skin flares in almost a mask pattern and is in good condition around my eyes. Perhaps this is because I am experiencing photosensitivity and my glasses block that. Who knows. But I’m just glad I’m out of that hole.

My name’s Andrew and I’ve had Atopic Dermatitis (AD) my whole life. Mum always says one of my first words was itchy or “ishy”. Any person with chronic AD will tell you that while the physical symptoms are hugely significant, it’s the psychological impact which is the most catastrophic. While my AD has at times affected all over my body, it’s my face which has always been my warzone. My condition constantly oscillates seemingly with a mind of its own. The lack of consistency and control (despite doing everything “right”) is incredibly anxiety inducing and frustrating. I’m the kind of person that if the Dermatologist told me I needed to run 10 miles before work every day to have clear skin I would be glad and happy to do so. However, despite seemingly endless medications and routines I ultimately have very little control. Having a supportive and loving family meant that I started life fairly confident and self-assured. However, this was gradually eroded throughout school. I had to work very hard (often unsuccessfully) to not be a target of bullying. With a visible condition there’s just nowhere to hide and the comments were relentless. The stares, double takes and whispers can be very hard to cope with. Growing up my family were very religious, even on holidays we went to church on a Sunday. We were on holiday in America when I was around eight or nine and we went to a church which was enormous compared to back home. I was in a class of around 50 or so kids my age. As there were a few new faces the teacher took turns introducing us. When it got to my turn, the comments quickly began and before long the whole class was staring at me. All I could hear was “wow he’s so red” “I’ve never seen someone so red” “look how weird he looks”. I felt surrounded and humiliated. The more the comments and laughter came, the redder I became. None of the adults did anything and I just wanted the ground to swallow me up. When my skin is in full flare, I feel incredibly ashamed about the way I look. I try not to let it hold me back, but I feel like every centimetre of me is tense. The stares, double takes and whispers can be very hard to cope with. For around five years, I ran a small electrical firm. I would go into meetings with potential big clients knowing I needed to come across confident and competent when really, I was mortified about how I looked, and my mind was taken up by the pain I was in. It was tough. Flare ups can cause Andrew to feel self-conscious and uncomfortable The psychological impact is obvious when I’m in a full flare, but when my skin isn’t “too bad” it comes with its own challenges. As my AD presents itself as redness, I’m constantly anticipating the next thoughtless comment: “wow you’re so sunburnt” or “you look like a lobster”. This creates a complex situation where I’m embarrassed and want the situation to be over as soon as possible, so sometimes I just laugh it off, but I also want to educate them, so it doesn’t happen again. There’s also the added complexity that if I explain that I have a condition, they’re usually mortified and very apologetic, which also extends the situation and makes me feel uncomfortable. As I’ve begun doing more and more advocacy work, I am trying to reframe these situations in my mind to be grateful for an opportunity to educate someone. However, that’s easier said than done. Representation has become a key social issue and rightly so, but for people with visible differences there’s still a long way to go. That’s why I think Changing Faces’ #IAmNotYourVillian campaign is so important as it calls on the film industry to stop using burns, scars and other visible differences as a symbol for villainy. You deserve the right care, so don’t have any guilt or hesitation in asking for it. I regularly hear comments casually thrown around that can have a deep impact on all those who are suffering. For example, I’ve always been an avid reader and growing up I loved a series about a teenage spy called Alex Rider. I can’t remember the exact quote, but it was something along the lines of “he should have been handsome if it wasn’t for his skin condition” to describe the villain. At a young age, this was very difficult to hear. I’m fortunate to be in a better place now. My mental health is at its best when I feel like I’m achieving and progressing. However, there was a long time where facing the world every day was incredibly difficult. Now for the work I do I am able to be productive from home, which makes life so much easier on my worst days. I also have a wonderful support network, and I honestly don’t know whether I’d still be here without them. If I could give one piece of advice to others, it would be to strongly advocate for yourself and don’t allow yourself to be dismissed or ignored. This was something my mum taught me growing up – sometimes unfortunately you’ll have to demand the help you need. You deserve the right care, so don’t have any guilt or hesitation in asking for it. I recently stumbled into patient advocacy, and I’ve been really inspired by this work and want to help those who are suffering in any way I can. I’ve started a blog (which is very much a work in progress) about my journey with AD, so do give it a read and reach out to me there.

What we can learn from those who know how to demand change While at the Sanofi headquarters last year for a project, which rather terrifyingly was a half hour live interview, I was fortunate to have a quick conversation with Dr John Forni (country medical director). Despite my slightly elevated heart rate and sweaty palms I mentioned that I’d found this advocacy work really inspiring and was looking to progress this in the future. To which John very kindly recommended a meeting with a well known HIV advocate called Tom Hayes-Isaacs in order to learn from an expert the best ways forward. In stereotypically me fashion I turned up at St Pancras a good hour early as I was anxious about being late but in turn traded this instead for walking around anxiously for an hour getting myself worked up about what was ultimately a fairly relaxed meeting. We met at a venue right near the station. I spent the next couple of hours with people who had been and done everything that I’m trying to achieve. John and Tom were very modest about their achievements but I felt very fortunate to be sat across from people who had for example spoken at the UN multiple times on behalf of their community. I found it very interesting how advocacy for our conditions overlap; stigma, common myths, the way cost is often prioritised over adequate care etc. One of the interesting topics we discussed was the different forms of stigma which are: External Stigma-negative beliefs/attitudes people hold against us Systemic Stigma-when those negative beliefs are embodied in laws/institutions Self Stigma-when we direct these negative beliefs/attitudes towards ourselves Perceived Stigma-something we all know too well, when no malice is meant and yet the anticipation of stigma causes us to see what’s not there. I think we can all recognise examples of how each of these have affected us. We also discussed the issues people of colour with skin conditions face when advocating for themselves. For example the contrast is not quite so dramatic on darker skin tones which must make it even harder to get health care providers to listen and take them seriously. Something which I took inspiration from was how self assured they both were. You can tell Tom doesn’t tolerate any nonsense and is very able and willing to call it out. This is something I think is vitally important for me to work towards. Like so many people suffering with chronic conditions I feel like I’ve had the confidence beaten out of me. However if I want to be an advocate and speak on people's behalf I need to have a loud and confident voice to be heard by the people I need to sit up and listen. They were both very generous with their time, I know John in particular has a job role that involves him travelling a lot so I was very grateful for the opportunity. I then had to dart off before my £12 ticket on the train in became a £71 ticket for the way home. Unfortunately progress can be very slow without a strong community refusing to be dismissed and demanding the change they need. The HIV community is a textbook example of how to get things done and we need to use them as inspiration for how to get the changes we so desperately need.

Trying to hold to the positives Being a patient advocate involves talking about what are ultimately undeniable negative factors in our lives, however here’s my list of things I’m grateful for: Being born in 1993 rather than 1893 has to be right up there. There’s many reasons I much prefer being around today but not using an ointment with mercury as the active ingredient or being prescribed bloodletting is top of the list. I believe that while the “cures” for chronic skin conditions are still not readily available, science is a lot closer nowadays compared to the rest of history. When I’m having a catastrophic flare I know that popping some prednisolone will give me a reset and reprieve which people for the vast majority of human history didn’t have the luxury of. Also with the”decade of dermatology” upon us things are looking very exciting and optimistic. Being born in a first world country. I’m aware that “privilege” is sometimes a loaded word. From having worked on building sites for 10 years with people who certainly didn’t feel particularly privileged with the way they made their money I can empathise with that point of view. However there's no doubt in my mind that I won the lottery being born in this country. We all know the flaws with the NHS but I thank my lucky stars that I have access to it and live in a country where healthcare is seen as a human right. Being born to a loving and supportive family. I cannot begin to express how fortunate I am to be born to the family I was. I have always felt supported and loved and was never made to feel like a burden. My parents and wider family would move heaven and earth to help me in any way I needed. However, the less obvious way my support network was so important was because my family was full of inspiring characters that, as silly as it sounds, made me feel like I came from a tribe of “winners”. They all came from nothing and have some very funny/slightly sad “poor stories”. I had an uncle who was scouted to run track at an American College, an uncle who was a Royal Marine, a Grandpa with amazing stories of his time in the RAF, another grandfather who with 7 children grafted his way to being a sales director so we would get perks like the odd ticket to a box at Aston Villa. More than that though they were all likable, confident, competent people who were fun and inspiring to be around. My Mum is a ray of sunshine, you have radiators and drains and Mum personifies a radiator. My Dad was the fun, likable, easy going Dad. Feeling as if I was one of these people gave me the self worth and self confidence to survive school, while this was gradually eroded it held out just enough. My wife is my undeniable evidence that I must be worth something. Donna is a beautiful, inspiring, hard working, kind woman, which is why I clung to her desperately when she showed half an interest in me. She is my soulmate and my proof that all those people who tried to make me feel worthless were wrong. I don’t know where I would be without her and I am grateful (and slightly shocked) that I get to call her my wife. Being told to be “grateful for what you have” or “see the bright side” can be incredibly annoying when you look and feel like you’re being eaten alive every day. However if you can relate to any of my list it’s good to sit back and take stock of how much worse it could be and how in some ways we are fortunate.

Even in a country with universal healthcare Here’s me feeling very silly taking a selfie on the way to St Thomas hospital for a checkup at Ophthalmology due to AD related issues (I was dead against coffee but my wife got me onto caramel oat milk lattes and now I can’t help myself). Another appointment, another £100 on train tickets and parking alone. Now let me start by saying I thank my lucky stars and understand how privileged I am to be born in the country I did. If I had the misfortune to be born in so many parts of the world the cost of my care would have been crippling and for that I will be eternally grateful. However the NHS is of course not “free”, we all pay into it to make sure no matter your station in life you have access to healthcare. Which I do believe is a cornerstone of any society that can call reasonably themself civilised. Unfortunately having chronic AD means that I have almost incessant regular costs on top. Costs which I only really realised how much they added up when I sat back and really thought about it. I live in the Midlands, around half an hour from Cambridge, to receive the care I need, St John’s institute of Dermatology in Guys and St Thomas Hospital in London is by far mine and many others best option. Again I must count myself lucky as my 4 hour round trip pales in comparison when compared to the distances others have to travel. The postcode lottery is a very real thing and the care I’ve received locally is simply in a different universe at St John’s. Again this is a small price to pay for the access I have to world class experts and eye wateringly expensive medication. But this does add up, over the last 6 months I’ve spent around £1000 in train tickets alone (all of which have involved getting up very early or rushing in late to try and avoid the sky high peak prices). Another part of AD which again other sufferers will probably know all too well is the constant experimentation of any and all potential treatments. From diets, to medications, to lifestyle changes, we’ve tried them all. These often unfortunately come with a price tag. For example, I recently invested in a water softener through Harveys (who’s service was excellent from start to finish by the way). There’s a fair amount of evidence that hard water can irritate or even cause skin conditions. This came in at a cost of around £2000 with regular payments for salt blocks to maintain it. I also recently bought a Dyson purifier which was another £600. As I’ve mentioned in previous posts in the winter/spring of 2022 I had a horrendous flare. I was covered head to toe in rashes and weeping sores, I was shivering from infection, I had an ulcer in my eye, I was getting a couple of hours of broken sleep at night and feeling like I was being eaten alive 24/7. My wife and I would finish work, have dinner and just go walking until it was time for bed as I simply couldn’t just sit and read a book or watch tele with the mindbending itch. I walked into my GP, psychologically on my knees, to be told that my referral to guys and St Thomas would take around a year. How anybody can be expected to wait a year in this situation is beyond me. I was then forced to find a dermatologist who worked in the clinic that I needed to be referred to and book a private appointment on Harley Street knowing that she would see the urgency of the situation and expedite my appointment. This came at a cost of around £300, rounded up to £500 for my wife and I’s train ticket as I needed her support. It terrifies me that there are people out there suffering like I was without the resources and knowledge to be able to bypass that situation like I did. Then there’s the endless smaller costs which rack up; I use more expensive washing detergent, hypoallergenic pillowcases, compression sleeves to help the itch, days off work for appointments, all manner of supplements which may or not help etc. The difficulty is I would give just about every penny I have to be free of this condition and so when an advert pops up for the latest “treatment” for £15 the voice at the back of my head says “it’s only £15 its worth a try”. Further to this It does really hammer home the importance of advocacy when I walk into a medication review appointment and I’m told that moisturiser will no longer be prescribed through the NHS unless specifically prescribed by a dermatologist. This is the thin end of the wedge and yet another example of the dismissive and unsympathetic attitude towards those suffering with chronic skin conditions. This is NOT a bit of a rash, this is a potentially life destroying disease and there should be no attempts to limit the medication that people so desperately need for a condition they did nothing to deserve. When I was growing up, particularly when I was very young, my parents really struggled financially due to my Dad’s carpet cleaning business going under and being left with a huge business loan. My Dad worked 24/7 to the point my Mum said she felt for a time like a single mother. There was a Mum’s and children’s group that cost £1 per meet up and they couldn’t afford it. Yet my parents moved heaven and earth to try everything and anything to help ease my suffering. Once they felt they’d exhausted the NHS route this involved all sorts of private therapies and treatments which came at a cost they simply didn’t have. From the age of 23-28 I was building my electrical firm business, over these years I was working flat out physically and mentally; I was up at 6am, spent the day working as fast as my hands would move until around 6 or 7pm and then I was in the office at home until at least 9pm, day in, day out. I worked and saved obsessively over my apprenticeship so when I started my company I’d just bought my first house and at that time I VERY much did not have the money for what felt like a mountain of additional costs. I also VERY much did not have the time to be going to all these appointments and missing days however I simply had no choice. I’m very fortunate now that I have since sold my electrical firm (certainly not for mega money) however I’m now in a position where I can reasonably handle these extra costs. However when I sit and think about this it goes entirely against the ethos of the NHS. Now that I've started this advocacy work I think of these things more through the eyes of others and there are many who simply are not in a position to be spending this kind of money and there’s no reason why they should be expected to do so. I’m in the process of applying for PIP (personal independence payment) which if successful could result in a payment of £68.10 per week. This would significantly help with these additional costs. I will keep you updated on how this goes. Despite the eligibility criteria including “having a long-term physical or mental health condition” and “needing help managing my medications and treatments” for example, I still feel illogically a pang of guilt for applying. I think the dismissive societal attitude towards skin conditions has unfortunately permeated even me. However we are supposed to live in a system which doesn’t punish people financially for being born with a condition that is completely out of their control and yet this has been the case my whole life.

The psychological toll of the seemingly random oscillations of atopic dermatitis I’m sure almost every single human being in the world feels a healthy dose of nerves before their wedding day. For me it was varying levels of panic in the lead up. What would I do if I were to wake up on the day and I was having a massive flare. How would I cope feeling mortified in the way I looked and spending the day with hundreds of eyes on me and photos taken which would end up on some people's walls for years, on the day you’re supposed to “look your best”. Fortunately I was lucky that day and the relief was euphoric. However the anxiety and trepidation had already robbed me of much of the excitement beforehand. I like to pride myself on being disciplined and I don't shy away from doing the hard thing when it needs to be done. If somebody came to me and said I needed to run 10 miles every day before work to have clear skin I would rip their arm off. Unfortunately that isn’t mine and any AD sufferers situation. Despite all encompassing, time consuming and ever complex routines and doing “everything right” it is still a lottery to whether you wake up with your skin on fire. The unfairness and lack of control is psychologically exhausting and takes from you even when your skin is clear. I have always found strength and hope in believing that my situation is in my hands. If I had a flare I would say “oh I know why, it's because I ate X” for example. However the older I get and the more endless experiments with little success I have undertaken the more hopeless this has started to feel. Which in a way feels both freeing and crushing. Freeing in that I’m not blaming myself as much but crushing in that maybe I do have little control when it comes to modifying my lifestyle, nutrition, exercise etc. Perhaps with my condition those things just simply don’t touch the sides. It also gives me a cynicism towards people who I see as having the cure to their issues “in their hands”. This is a part of me I don’t like and am working on as of course logically no one's situation is as simple as that. We live in a perpetual state of mental imbalance where we are either in a flare and suffering or living in fear of when the next one will be. This taints so many of life’s most precious moments as the anticipation for any major life event quite often turns into panic and dread. Situations which can be daunting enough, weddings, interviews, important business meetings, large social gatherings etc become something in the diary which hangs over us. Often these things can be canceled but I for one feel uncomfortable canceling at the last minute and even as an introvert there’s plenty of situations I don’t want to miss out on. This is yet another battle that most people don’t consider when thinking of the challenges of living with a chronic skin condition.

The often crushing lack of empathy from those we turn to for help. “It’s not really urgent is it?” This is the response I had from a dermatologist. I was 15 years old, having to face daily the psychologically harrowing experience of going into the Jungle that is school. Not only feeling like my entire body was damaged and under attack but having to deal with the constant threat of the next crushing and humiliating comment. From a lifetime of using the NHS I can usually tell within seconds of an appointment the quality of the care I’m about to receive. In this instance I was immediately met with a nonchalant and dismissive attitude. I tried to plead my case and ask for help but it was very clear that the aim for the doctor was to get me out of the door as soon as possible. I was promised a prescription for a cream and left. This prescription never materialised. A few days later I phoned the doctor back and was told “it’s not really urgent is it?”. I could give endless examples of this seemingly unempathetic attitude, poor quality care and tactless comments from healthcare professionals. From being told my skin looked scaly to the medical term for the scarring on my neck being referred to as a “dirty neck”. Now don’t get me wrong, I have received care from some wonderful HCP’s who have listened, empathised and have given me a feeling of hope that my suffering was understood and the appropriate steps were being taken. I will forever be grateful to those who made me feel listened to when I needed it most. However in my experience this is nowhere near as common as it should be. Which is why clinics such as at St John’s institute of dermatology at Guys Hospital in London often have referral times of over a year and have people coming from as far as Scotland to receive the care that they so desperately need. How can we expect society to truly emphathise with the crippling damage both physical and psychological of a chronic skin condition if we can’t even take it for granted from our healthcare professionals or even our dermatologists? This feeds the general “it’s just a rash” attitude which leaves us as patients often being completely dismissed as the urgency is not truly recognised. Suicide is the biggest killer of people under the age of 35. It doesn’t take a psychologist to work out that a condition which doesn’t allow you to sleep, robs you of every ounce of your self esteem, leaves you feeling completely alienated from those around you and leaves you in pain and discomfort every waking moment of your life would be a very significant contributor to that risk. Yet the dangers are still not fully grasped and the urgency of the situation is still not fully understood even by those we should rely on for help. I am conscious of the negativity of this post however I think it is important to highlight the reality of my experience. I rarely believe these issues are due to any malice or “laziness” but simply due to a lack of understanding. And it is one of the goals of this blog to change this.