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  • No control and no consistency

    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.

  • "It's not really urgent is it?"

    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.

  • The challenge of looking different but not “different enough”

    How unmalicious people regularly insult my chronic health condition. I regularly wake up feeling and looking like I have the worst sunburn you can imagine despite being a pasty Brit who probably hasn’t seen the sun in months. I have that sinking feeling in the pit of my stomach as I stare into the bathroom mirror and picture the day ahead of not only feeling awful but the embarrassment of having to face the world when you are feeling so cripplingly self-conscious. I walk out the door and like clockwork the comments begin: “Wow you are so red” “Someones been out in the sun” “You look like a lobster” Now we’re not in school anymore, I know these comments are meant as simply a bit of friendly banter. For the vast majority of people being red after a holiday or a hard workout isn’t anything to be particularly embarrassed about. However in my situation my skin is red almost all the time, due to my chronic skin condition which I’ve battled my whole life. Something which is painful, embarrassing and mentally exhausting and it’s something I’m deeply insecure about. If we’re being honest, being red in the face is most certainly not a beauty standard and looks very unusual which is why it is teased in the first place. It is also something that I have deep scars from from school as I was made to feel like a freak. Again a one off situation is nothing to get upset about but living with it day in day out, the strange looks, the nasty comments, you can’t help but dread just about every human interaction. Even if the comments don’t come, the anticipation of them is almost as bad. I feel that (for the most part) we live in a fairly civilised society and people can usually go about their life without fear of being openly mocked about their deepest insecurities. I’m sure it happens but it’s rare to see openly in public someone being mocked for being overweight, being too tall, too short, or god forbid for being in a wheelchair for example. And if it does happen there's a simplicity to the situation in that the person making the comment is an awful human being and I’d like to believe they would be shouted down. There’s a generally agreed upon set of characteristics which are off limits to comment about and unfortunately skin conditions didn’t seem to make the list. However in mine and many others situation unfortunately, we have to deal with relentless soul crushing comments constantly. It’s almost easier when my skin is flaring horrendously as it then becomes obvious that there is something seriously wrong with me and the comments stop. Then there’s the impossible question of how we handle these situations and please if anyone has a solution to this let me know! Someone unintentionally says something hurtful, essentially mocking the health condition I’m suffering with. In that scenario I’m so hurt and embarrassed all I want is to gloss over it but then there’s the fear that they will do it again. The alternative is to make them aware that I have a condition to which they are mortified and apologise profusely which also makes me uncomfortable. I think the best way forward is to make them aware but it isn’t a conversation I particularly look forward to having time and time again. I’m trying to completely reframe these situations in my mind to be positive and look forward to them as I can use them as a teaching opportunity and avoid the embarrassment of the next person. This is certainly the plan anyway but the reality is with scars as deep as I have I know this will take a long time. Almost everyone is deeply insecure about something and people need to behave more tactfully when making personal comments about people's appearance. My wife for example is a gym bunny and a lot of people think there can’t be anything she’s particularly insecure about physically. This is certainly not the case but people will think it's okay to make comments that she finds insulting. I heard a podcast recently with Richard Osmon and he spoke of his insecurities of being too tall. Now to some men this seems strange as height is often seen as a desirable trait for a man however this highlights this important issue. In this podcast he also said a very important quote “If you see somebody is different, they do not need to be told”, this hit the nail on the head for me. As if somebody is different, unless they’re one of these genuinely amazing enlightened people who can be truly confident in their difference, there’s a huge chance they’re insecure about it and bringing attention to it does nothing but reinforce their insecurity.

  • Martha’s law and AD

    How we can learn from Martha’s sacrifice “If you’re worried something’s going wrong, you should scream the ward down because that’s what I didn’t do and I regret it.” These are the words of Merope Mills, mother of Martha Mills who tragically, and entirely avoidably, died at 13 from Sepsis while in hospital. Her care was not escalated appropriately and Merope’s concerns were ignored. The fact that Martha’s obvious and immediately life threatening condition can be ignored in one of the leading hospitals in the country shows the risk we face as patients of a chronic but not “immediately life threatening condition”. We must, as sufferers of chronic AD, assertively and relentlessly advocate for ourselves. We also must maintain a healthy level of skepticism to the “experts” and not allow ourselves to be dismissed. If you’re not getting the care you need, do not allow yourself to be ignored. While our situation is of course not as immediately life threatening as Martha’s, the long term effects of chronic AD can be catastrophic and all encompassing both physically and mentally. The “squeaky wheel” approach is the most simple way to explain how you must approach the NHS. The NHS is stretched to breaking point and resources towards certain patients and conditions are naturally prioritised. When the GP asks how you are, the answer is not “yeah not too bad”, you must explain in as much detail the depths to which you’re suffering, both physically and mentally. I would also recommend bringing notes and photos. Skin conditions are on a spectrum and on one end we have what around 1 in 2 people will experience; a small rash and some discomfort. On the other end we have the chronic condition; constant mind bending itch, night after night of broken sleep, waking up to bed sheets covered in blood, the psychological toll of facing what can be a very harsh world. Yet it does often feel as though the latter is treated with the same level of care as the former. If you’re a person of colour an issue you may face is that on a darker skin tone your AD can look less visible/dramatic and not truly reflect visually how much you’re suffering. Also for parents, a common narrative is that your child is just suffering from “childhood eczema” and will grow out of it. Whether or not that is the case, the fact of the matter is your child is suffering right now. Martha Mills legacy is Martha’s rule which gives patients, guardians and staff round the clock access to a second opinion from a third party, this is starting to be rolled out this year. This is certainly a move in the right direction and I believe will significantly improve patient safety. Educate yourself as much as you can to better request the treatment and plan you think is the best way forward. You deserve appropriate care for what you are suffering with, do not let yourself be brushed aside.

  • "Just Stop Scratching!"

    Why telling those suffering with a skin condition to “stop scratching” is completely unhelpful We’re all aware of how hard it is/or it’s perceived from the outside to be to quit smoking. There’s whole industries set up to assist with what is seen as a monumental challenge through patches, gum, even fake cigarettes. Governments have been involved for decades creating regulation graphic warning labels, ever increasing taxation and doing all it can to educate its citizens of the dangers. The negative health consequences to themselves and all those around them that they love are clear to see.  And yet despite all of this, with every reason in the world to quit, it takes smokers every ounce of willpower, drive and commitment to make the change. Some never can. Now imagine if you asked every smoker to go through this process of quitting, with one difference, they would have a lit cigarette in their hand for the rest of their lives and their cravings will never subside. This is what it feels like to life with AD. Imagine you are covered head to toe in itching powder, all day every day you have a voice in your ear screaming at you, begging you to scratch. Imagine trying to go through normal life, to focus and be present, whether at work or socially, to try and achieve your potential when the majority of your cognition is taken over by the insatiable need to scratch. This is our addiction and it is as simple as moving your fingernails a few cm, milliseconds, and the damage has begun. Despite all the negative health consequences that we know will follow, the embarrassment and shame of how it will look, the blood on our clothes, the way it’ll only make us itch more in the long run, we can’t stop it. Just in the same way smokers or any other addiction/impulse, we need that break from the cravings for their own sanity. And when we do scratch it’s accompanied by a level of euphoria more intense than anything else in life. In a way the screaming in your ear subsides but it also quietly pleads for more. Even as you feel the blood under your fingernails and you know the damage you’re doing and how this will ultimately lead to more pain, right now it feels like bliss, calm and peace. Those living with tourette's syndrome speak of a similar feeling, these people can, with a gun to their head, hold their ticks down in the short term. However, asking them to do so for anything longer than this is completely unreasonable and unrealistic. Believe me we try not to, I have gone through all manner of mental torture to force myself not to. Telling myself if I scratch today something bad will happen to my family for example. And I have pushed mentally further with this than any physical challenge ever could, but you always break. How can you not? it is simply not a sustainable solution to tell someone with AD to stop scratching. As with any addiction/impulse you can try putting measures in place; shorter nails, gloves, compression sleeves. However the barriers you can put in place are limited and if the need to itch is desperate and constant we all break eventually and find a way to satisfy that need especially when it is just so easy to do. We didn’t ask for this, we don’t deserve this and people need more empathy to the reality of living in this situation. While it can come from a place of love and without malice it can often feel like victim blaming. Like it’s our fault we’re in this situation, it’s because we have CHOSEN to scratch. There is no choice here. The only thing to blame is our condition, believe me we are giving our best and if we could stop, we would. What has helped me: One thing that has helped me tremendously with the itch is compression, I have some compression sleeves for example for my arms which quietens down the itch enough for me to go about my life normally to a degree.

  • A brief overview of my life with AD

    I was born with Atopic Dermatitis, my Mum says one of my first words was itchy or “ishy”. It is a condition which is all encompassing, not just in the way it affects your entire body but the way it affects you emotionally, psychologically, socially and in just about every way you can imagine. I’ve always been incredibly fortunate to have the support network that I do and I don’t know whether I’d still be here without them. Growing up my parents tried anything and everything and they’ve always said there was never a clear path and good advice was hard to come by. Once they’d exhausted everything that the NHS had to offer, out of desperation they even tried alternative medicine. If you can name a treatment/diet/lifestyle change that has shown any evidence to improve AD I’m sure at some point I’ve tried it; from every topical cream, to steroids, immunosuppressants, chinese herbal medicine, acupuncture, air purifiers, dehumidifiers, vegan diet, keto diet, carnivore diet and on and on. When I was very young I of course knew I had a condition but I was fortunate to have a high level of self-confidence, a result of loving parents and a tight knit extended family. However the older I got the more regularly I was told I was different and my self-confidence was gradually washed away. I had to work very hard at school (often unsuccessfully) to not become a target. That feeling of walking the school halls and anticipating the next cruel comment which would come from anywhere and everywhere is something that has stayed with me even today. Navigating the NHS was always hard work and it never felt like the severity and urgency of the situation was truly grasped. After years of seeing a certain dermatologist who essentially told me there was nothing more that could be done I went back to my GP and got referred to Guys and St Thomas in London where they told me that we were at the tip of the iceberg of things we could try. After a long journey with immunosuppressants and biologics I am still searching for the treatment which will keep me sustainable control my symptoms long term.

  • My National Eczema Society article

    https://eczema.org/your-stories/andrews-eczema-story/ Andrew’s Eczema Story 10 Aug 2023 | Categories: Andrew’s Eczema Story Selfie showing Andrew’s facial eczema The catastrophic impact of severe skin conditions is rarely fully appreciated. While the physical symptoms are very significant (being covered in rashes, incessant extreme itch and lack of sleep) these pale in comparison to the psychological effects, which are often devastating. There needs to be a societal shift in understanding, and also a shift even amongst many healthcare professionals. Comparing someone with a bit of a rash to someone with a severe skin condition is like comparing a cold to full blown flu, or a slight headache to a debilitating migraine. They are not in the same league and yet they are often treated as such. The lack of empathy, kindness and a general feeling of dismissal makes what is often a crushingly difficult situation that much harder. I was born with eczema. My Mum always says that one of my very first words was ‘itchy’. In a way, I was lucky because without the angels – my Mum and now also my wife – I genuinely don’t know whether I’d still be here. My parents tried everything and anything growing up; wet wraps, topical creams, steroids, moisturisers, you name it. Out of desperation, we even went down the alternative medicines route with acupuncture, herbal medicine and the like. Two things really made an impact on my eczema. The first was steroids, which would always be fairly miraculous, but the effect short lived and I would inevitably have to come off these due to the potential side effects and my skin would then flare straight back up. This did sometimes help in bringing a particularly aggressive flare down to within reason. The second thing was seeing a nutritionist, who stripped my diet back to where I was essentially eating rice and beans for months. She then slowly introduced food groups starting with meat, followed by dairy and then finally wheat. On the introduction of wheat my skin flared dramatically and since then I very rarely have any wheat products. School was very difficult for me and I had to work very hard (often unsuccessfully) not to be a target. Growing up, you really don’t want to stand out and with eczema being the cruel disease that it is, there’s no hiding with it. The nasty comments came daily and from anywhere and at any time. I was constantly anxious, anticipating feeling embarrassed and hurt, making it almost impossible to feel confident and self-assured. The comments are less malicious as I’ve grown up, but they’re often now more thoughtless. When people casually say that I look ‘red’ or ‘sunburnt’, it puts me in a difficult situation where I either laugh it off or make the person aware that I have a skin condition, both of which make me feel very uncomfortable. I missed a lot of school growing up, either due to a terrible night’s sleep or Mum would let me stay home if my skin was particularly bad to save me from having to face the world when I was feeling mortified by the way I looked. This then carried on to adulthood where I would regularly have to take days off for medical appointments. Being a self-employed electrician with a small team made it incredibly difficult organising time off. When my skin was flaring, as it did regularly, it also made any meetings with existing or potential clients considerably more daunting. Eczema on Andrew’s torso When I was around 14 years-old I started on immunosuppressant medication. This did have a slightly positive affect on my skin, but nowhere near what I would consider keeping it ‘under control’. I would go for my six-monthly appointments, when I’d be told there was very little more they could do for me, given a cream and sent on my way. After years of this, it was once again Mum to the rescue. After doing some research, she found that Guys and St Thomas Hospital seemed to have one of, if not the best, dermatology clinics in the UK. Why this option wasn’t suggested to me by any of the healthcare professionals I had seen over the years is beyond me. The care I received at Guys and St Thomas was second to none, and in my first appointment I was told “we’re at the tip of the iceberg as to what we can try for you”. I then had a full overhaul of my medications, a number of tests including photosensitivity, and started a new injectable immunosuppressant. This had the best effect of any treatment up to that point in my life. While my eczema wasn’t fully under control with the treatment, it was to a significantly better standard. After being on this for a few years, I started to read about the potential long-term side effects and my bloodwork was also showing that my liver function was slightly elevated. Just after my wedding, when I was 26 years old, I decided to come off the drug and try one last time to see if I could manage my condition without any heavy medication. For around a year after this my skin was teetering on the edge of acceptable, and multiple times it would get right to the point where I was about to call Guys and St Thomas, but then it would clear at the last moment. However, in January of 2022, I had a particularly horrendous flare-up that wouldn’t go away. I was covered head to toe in rashes, shivering from so many open weeping sores, getting around 2-3 hours sleep per night, and had an eye ulcer from the skin around my eye being so inflamed. The relentless mind-bending itch was unbearable. I would finish work, have dinner and have to go walking until it was time for bed as I simply couldn’t just read a book, or watch TV because of the insufferable itch. When I sent to see the GP for my flare-up, I thought at least in this instance I would be greeted with the sense of urgency my situation quite clearly required. However, as is so often the case, I was met with the typical nonchalant attitude with suggestions such as “let’s try a new moisturiser”. I was then referred again to Guys and St Thomas, but was told I would have to wait a year for my appointment. Fortunately due to a lifetime of navigating the NHS, I knew I needed to find a consultant that worked in Guys and St Thomas and book a private appointment, as they would hopefully see the urgency and expedite my NHS appointment. While it was a significant amount of money and there was a sense of guilt for ‘skipping the queue’, I had no choice. If it wasn’t for knowing this route and my support network, I honestly don’t know whether I’d still be here today. How someone can be expected to wait a year while getting two hours sleep per night and spending 24 hours a day looking and feeling like they’re being eaten alive is ridiculous. Andrew on the beach, enjoying his holiday At my Guys and St Thomas appointment, I was started on a new biologic treatment and the effects were nothing short of miraculous. I still struggle with the skin on my face (but nowhere near to the same extent), but from the neck down my skin was virtually clear. I went on holiday to Koh Samui in Thailand in January 2023, and spent a lot of time in swim shorts. I didn’t feel conscious of my skin at all, something I never thought I would experience. While it certainly isn’t perfect, my skin now oscillates within a far more reasonable range. While everyone has to find their own way with eczema, I’d like to share the following practical advice from my journey with eczema. If you haven’t seen your dermatologist recently, please do. While the treatments on offer for a long time have been fairly stagnant, there’s been some medications recently approved that have been getting some amazing results. There’s many more in the pipeline too. You have to advocate for yourself to get the care you need. While I do believe that the discussions surrounding mental health are shining a light on the profound psychological damage caused by skin conditions, you will still encounter a dismissive attitude fairly regularly from healthcare professionals. For example, when you go to your GP for a referral you have to drive home the point at just how deeply you are suffering and that your symptoms are not limited to the physical effects. It’s the same with specialists in any industry – some dermatologists are better than others or even just have differing areas of expertise. Many people with eczema believe that if you’ve been referred by your GP to see a dermatologist, and they can’t help with improving your symptoms, then that’s the end of the road. This is simply not the case. If you aren’t getting the results you need, I would urge you to go back to your GP and get referred to one of the leading dermatology clinics in the country that have better resources to treat people with more severe symptoms. Try to be kind to yourself, especially when you’re at your lowest. You’re not weak, but you are suffering from a chronic condition. A condition that is relentless, cruel and all encompassing. It demands a level of strength and resilience every single day that few people truly appreciate. Your support network will appreciate what you are going through and make sure to lean on them when you need to. https://eczema.org/your-stories/andrews-eczema-story/

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