Sarah from the Ampersand Health team shares her own personal experience of being diagnosed with eczema and the impact that it has had on her life.
In 2021, I found myself becoming a very itchy person.
I would constantly scratch my arms, legs, back and face. At first, I blamed the itching on my allergies (nuts, coconut) and urticaria (chronic hives), both of which I had lived with since childhood. The strange thing was that I had avoided all of my known allergens my entire life, and it didn’t quite make sense that suddenly my skin was unbearably irritated. I had no hives, and I couldn’t remember the last time I had a close encounter with a peanut.
The itching sensation on my arms and legs caused me to scratch my skin uncontrollably, especially in the evening. I would often do it unconsciously, not realising how much damage I had done until blood was drawn. I would notice a few days after a scratching fit that I would be covered in long marks, scabs from where I had gone too far. Some of these superficial wounds ended up being deeper than I thought, leaving light white scars permanently on my skin. I hated the marks. They reminded me of the scar that I had from flying off a treadmill when I was 12, and it felt like one more imperfection on my body that I didn’t want, and didn’t feel I deserved.
I was scolded by my friends and family for scratching so much and was told that my skin was just dry and that I should drink more water (which I’m notoriously bad for) and use more creams on my skin. The comments frustrated me, and I felt myself becoming angry at my body, and unfortunately, at those around me.
After a few months of scratching my skin away, I went to the doctor.
At first, they thought it was an infection of some sort and I went onto a course of antibiotics – but nothing changed. After that, I was given an anti-fungal cream, and then when that didn’t work, I started taking prescription antihistamines (a quadruple dose to what is suggested to the ‘average itchy person’).
It took a few more visits to my GP to finally diagnose my eczema. It felt good to label the problem because it gave me a sense of hope around finding a treatment that would stop my itching. Clearly a few months of antihistamines had done nothing for me (other than make me extremely sleepy 24/7).
It was frustrating to have gone through so many hoops to end up being diagnosed with something that was so common. But the frustration was overtaken by relief, relief that the confusion and search for a diagnosis was over.
Life with eczema has been difficult. There is this constant fear that lingers in your mind, of waking up in a flare and not knowing what caused it or how to stop it in its tracks. There’s this sense of impending doom when I feel my eyes or lips beginning to tingle at night, and I begin to wonder which cartoon character I will wake up looking like (my usual cartoon twin is to Gonzo from Sesame Street – particularly in the eyelids).
I can deal with my back, arms and legs itching, because I can cover them from the world if I let my urge to scratch get the best of me. But the eczema around my eyes and lips is a whole other story. It’s pretty hard to cover your face, especially around such a sensitive part of your skin. The skin around your eyes is very thin, and when you have eczema on your eyes, they often become quite puckered, dry, flakey, itchy, red, and no surprise – painful. I became fearful of topical steroids early on, hearing horror stories of how it could thin the skin around your eyes to the point of permanently damaging it. But at times, the relief it provided me was worth the potential demise of my perceived ‘eyelid aesthetic’.
At first, I would cover up the redness and texture with makeup. But the thing is, makeup would make my eczema so much more obvious because it simply can’t sit cleanly on a dry, flakey surface. I remember at a certain point embracing the redness and adding a similar colour eyeshadow to my eyelids. It would burn – but I would do my best to ignore the pain and focus on the fact that I looked a little more ‘normal’.
Eventually, I decided that my want to put makeup on had to be less than my want for the flare to end. The more makeup I put on, the worse my eczema became. The broken skin that I had caused from rubbing and itching my eyes would get increasingly irritated with makeup and it would burn like a fire each time. I had to draw a line after a few flares, and accept that the makeup just wasn’t worth it. My frustration caused tears, my tears caused irritation, and the irritation caused my flares to worsen. At a certain point, crying became more of a trigger for pain than anything else.
I would spend my mornings jade rolling or ‘ice-cubing’ my face – whether this actually helped or not I can’t confirm or deny, but it definitely made me feel a bit better in the moment.
I also became best friends with Vaseline, using it 24/7, even once finding myself waking up in the middle of the night with the tube in my hand, smothering it on my eyes and lips unconsciously (the eczema version of sleepwalking). I kept mini tubs of Vaseline everywhere: in my purse, on my side table, on my desk, in my bathroom, and even in my coat pockets. I became obsessed with it and its ability to block my fingers from scratching or rubbing. I tried to create the illusion that I didn’t have so much of it, embarrassed that my obsession had gone this far. My Amazon delivery history was probably 99% Vaseline orders by 2022 (and I won’t lie, it doesn’t look much different a year later).
Of course, having eczema has had a huge impact on my self-esteem. However, I have learned over time that it does not make me less of a person. How you look on the outside is so insignificant compared to who you are on the inside. I’ve been told this many times, especially during bad flares, but you really have to sit with that sentiment to believe it. And even when you do, there will always be days where you don’t feel confident about the way you look, whether you have eczema or not.
When I don’t like my reflection on bad days, I try to be kind to myself because I know how hard my body is working to repair and work against my flares. Learning which medications, creams and products help you during a flare is crucial to managing eczema. It may take a lot of trial and error, but it is possible to manage your symptoms and reduce flare frequency, you just have to be patient with your body, even though this can feel like an impossible thing to do at times.
Eczema as a condition is truly undermined in its ability to impact one’s mental and physical health. Even though I try to be kind to myself, and know realistically that looks aren’t as important as they seem, I would be lying to say that they don’t matter to me.
They definitely matter.
When we think about people with skin issues, we don’t realise how important the way someone views themself is to their health. The worse you feel mentally, the worse you will feel physically, and vice versa. The physical appearance of eczema is a major concern for a lot of people I have met who also live with the condition, and it definitely makes the top of the ‘bad’ list for me – and I don’t think that’s something that should be overlooked by medical professionals as being unimportant. It’s similar for people who are impacted by extreme acne; it affects you on a much deeper level than you can imagine. We all want to look ‘normal’, and when that feels like an impossible goal, its impact can be indescribable.
Eczema is also underplayed a lot by those who don’t know much about the condition as simple ‘itching’. I have heard before that being itchy isn’t the worst thing that you could be. But it goes way beyond itching, and the itching that the average person has experienced is probably nothing compared to the eczema itch, which is painful, causes burning, bleeding, inflammation, and can negatively impact your ability to sleep and function ‘normally’. It can feel torturous at times, and I can only hope that one day eczema is seen as a condition worthy of attention for the impact that it can have on someone, because to be honest, I never hear anyone talk about how bad it can be.
My sister also lives with eczema, but hers is more widespread and severe. I watched her as we grew up together, suffering from the symptoms and struggling to find relief. Her hands would flare so badly that she could barely open and close them. I remember thinking how difficult it must be to experience. During the peak of COVID, when everyone was constantly sanitising their hands, she struggled to do so, and opted for gloves, as the alcohol in sanitizers would create the worst possible pain on her open cuts. I didn’t understand it fully at that time, but now that I have eczema as well, we can share tips and advice on how to manage it, which makes the experience a little less isolating.
Being lucky enough to work for a company that focuses on conditions like eczema, I found sharing my condition diagnosis with the team at Ampersand Health made it so much easier to cope with. On the days where I didn’t put my camera on in Zoom calls, fearful of how my puffy eyelids would appear, or simply not wanting to show my makeupless face, I was met with understanding. My team members check in on me when they know I’m experiencing bad days, and they try to help me the best they can when I am struggling.
This is something that everyone deserves to have in their workplace, even if your workplace isn’t full of people who work in the health industry. Having a simple conversation with someone can make you feel so much better and help provide you with support that may become invaluable to your work and condition experience.
Although I know that there is no cure for my eczema, my current goal is to create a better flare management plan for myself, so that I stop getting panicked when I wake up to a bad flare in the morning. I hope through working with the eczema community, I can learn more about other people’s experiences and help to provide them with resources and tools that will help them along in their journey. I have only recently started my own, and hope that there’s a better future ahead of me (that’s hopefully less itchy than the present).