A survey completed by the Eczema Society demonstrated the significant emotional impact of living with eczema. Out of 530 adults surveyed, 85% described feeling self-conscious or embarrassed about their eczema.
We are no ecz-perts, as we have never suffered from the condition ourselves. However, as doctors, we feel it is so important to try and understand what it is really like living in a sufferers skin in order to appropriately treat and support holistically. With this in mind, we asked Grace, a psychology masters student and blogger of @AllThings.Eczema about her eczema journey.
Hi Grace, thank you so much for taking the time to talk to us about your eczema journey and how it impacts you. Can you tell us a little bit about the type of eczema you have?
Hi Girls! I actually have experienced three types of eczema. I wasn’t aware until it happened to me, that you could suffer from more than one type, even at one time. My first experience was with atopic dermatitis, which developed when I was a toddler and settled relatively quickly. My next experience of eczema began in my teens when I developed what I now know to be contact dermatitis. This began not long after I started experimenting with makeup and I would have a constantly sore upper lip and eczema around my eyes. I found out years later that the eczema on my face and the excruciating cracked hands I would get all year round was a result of both Atopic and contact dermatitis, with allergies to limonene, a fragrance derived from the skin of citrus fruits, and methylisothiazolinone, a preservative mix. At the time of my diagnosis, these products were in the process of being eliminated from ‘leave on products’ due to the number of contact dermatitis cases it was creating!
Finally, I suffered with dyshidrotic eczema, or pompholyx on my hands whilst I worked behind a bar. On reflection, this may have been more of an occupational problem as this specific type of eczema quickly settled after I left (because my skin was too severe to continue working at that time!).
Wow, you have had such vast experience of various types of eczema, how has this impacted on you, and can you talk about the emotional aspect too?
Living with eczema affects every aspect of my life. It can be extremely tough but has, undoubtedly, built my mental resilience and appreciation for the little things in life.
Eczema can be a heavy burden and it can be difficult to change the narrative to find the positives in the situation when it feels like your body is giving up on you. Our skin is our largest organ and greatest protector, and there were times where I forgot how significant it was and was very bitter towards it and my condition. Sadly, that only served to make my condition worse and also led me to understanding the link between our minds and skin. I went on to study the importance of a healthy doctor-patient relationship in atopic dermatitis at university.
Dealing with eczema can often feel like a full-time job. It affected my relationships, mainly my friendships due to my skin stopping me from socialising and destroying my self-confidence, and eventually led to anxiety and depression. Eczema is tormenting, leading to lack of social contact, pain and loss of sleep, and can be a driving force behind these mental health conditions.
Despite its unpredictable nature and its ability to steal away those little quirks that make you you, and the negative effects it has had on my mental health, it has also encouraged me to look at my health holistically. I am more attuned to my body and recognise when something is not quite right. Subsequently, I have the confidence to approach healthcare professionals about any issues. I also focus on my mental health through running (or at least trying to!), setting boundaries, understanding that those around me have a detrimental effect on my mental wellbeing, and intend to begin journaling.
Thank you for being so open and honest about the impact eczema has had on all aspects of your life. It is eye-opening. I think people often disregard eczema as just a rash, but as you demonstrate it can have debilitating effects. With this in mind, how have you found your experience with healthcare professionals managing your condition?
I have had a real variety of experiences with healthcare professionals when I have approached them about my skin. I have been refused dermatology referrals, skin infections have been missed and point-blank ignorance. I have, however, also experienced incredible support, from education on emollients, ongoing support and treatment that puts my needs and wishes at the forefront, as well as a general understanding and empathy from a team that go above and beyond for their patients.
If I could highlight one thing, it would be for GPs or healthcare professionals to explain the importance of emollient therapy. I have found over the years that prevention over treatment is a concept that is pushed by GPs, but the guidance for how best to use this first-line treatment - and ingredients to look out for - is lacking. I appreciate that time is not on the side of healthcare professionals, however I believe that a conversation about this would greatly improve the outlook for those with eczema.
For me, personally, when I seek help with my skin, empathy and understanding is without a doubt at the forefront for me. It is so easily embraced by patients in times of suffering and can be the difference between a positive and negative experience, irrespective of treatment management options and referrals to additional support.
I also felt that I was to blame for the spread of my eczema, due to an assumption that I was not adhering to the treatment recommendations based on my very visible symptoms and subsequently was refused dermatology referrals. I could not get away from this until receiving treatment from a dermatology clinic. Healthcare professionals were always very quick to downplay my experiences with eczema, despite presenting with a severe case. I would encourage healthcare professionals to listen to the lived experiences of their patients and not assume.
Your experience is really interesting, and hopefully by raising awareness, we can improve the way we manage those with eczema, aiming for a more holistic approach. Having lived with eczema for many years, is there anything you’d advise people who are also suffering from this condition?
This a difficult one only because I could go on and on! I would say firstly to make emollient therapy a priority. I’m sure the words of your doctor or a parent/guardian are echoing in your mind as you read that, but it has taken me years to really appreciate the importance of a consistent emollient routine and finding an emollient that suits my skin. It can feel like a chore, but it is the best way to exert some control over the condition!
I would also encourage others to educate themselves on eczema. Education is absolutely key to understanding eczema and I believe that subsequently you become more equipped in dealing with and accepting your condition. Become the expert on your skin condition and this will set you in good stead to speak with healthcare professionals, ensuring that your expectations can be well communicated.
Setting boundaries has also been absolutely key for me. Trying to make people understand your condition will prove difficult and so, from experience, I would encourage setting boundaries and understanding that saying ‘no’ does not make you a bad person; prioritising your health, both mentally and physically, is incredibly important. Talk to friends and family, talk to professionals. Just talk! Write your feelings down. Anyway you can let your thoughts and feelings out to relieve the weight, do!
Finally, are there any resources you’d recommend for healthcare professionals, both to read as well as giving to their patients?
As I go along my eczema journey, I access lots of fantastic resources that have driven my hope and determination and have provided brilliant tips on how to deal with my condition. However, for every great resource, there are thousands of unreliable resources that, in my opinion, can be extremely damaging to a vulnerable individual suffering with eczema, desperate to find some relief. Therefore, I would highly recommend the National Eczema Society, and the National Eczema Association. They each share lots of evidence-based information and research, and give tips on how best to manage eczema including what treatments are currently available.
I would also highly recommend engaging with the eczema community online. This has been my greatest support and has allowed me to chat with others in a similar situation. Eczema can be difficult to understand and is often downplayed by non-sufferers, so having thousands of others that understand and empathise can be extremely helpful.
Thank you Grace @AllThings.Eczema for giving us a glimpse into what it is truly like to live with a chronic condition such as eczema. It was really informative. We will definitely be changing the way we practice, ensuring we focus on a holistic approach when treating those with eczema!
Thanks so much to The Aesthetic Medics and the lovely Grace for providing us with some incredible insight into eczema!