See Andrew’s blog for more about his journey with 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.
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.
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.
See Andrew’s blog for more about his journey with eczema.