I’ve wanted to write another blog post about the emotional impact of rosacea for a while, but every time I start I either get too upset or it turns into a furious rant. I’ve finally got all my thoughts down in a calm way and I really hope that this can be a jumping off point for a wider discussion that results in better awareness for the unseen impact of skin conditions.
Trigger warning: suicide.
At least once a week I will get message from someone who is really struggling with their skin, but apologises for being upset because they don’t see their skin condition as severe. We are constantly told that we should be positive, that it could always be worse. I know that people are trying to be kind when they say this, but it does not help. It fact it has been found that there is little correlation between the severity of a skin condition and the emotional effect it has on people. Everyone is different. Someone might have quite severe rosacea but have absolutely rock solid self confidence, while someone might have very mild rosacea and really struggle for whatever reason – maybe they work in a customer facing role, maybe they live in a climate that means wearing make up is difficult.
Rosacea (and many other skin conditions) make you retreat into yourself. Many people I talk to have never spoken about their rosacea to anyone else, because they don’t know how to explain the impact it has had on them. And I think that this is because skin conditions are not taken seriously. They are looked at superficially. This is especially noticeable when it comes to any medical interaction. In the UK GPs are allocated about 10 minutes per patient and are obviously keen to ‘cure’ you. So when you go into your appointment with a skin condition, their focus is how to deal with the problem at hand. Therefore a cream, or some tablets, are the typical response. But rosacea needs a 360 degree approach – applying a cream may help to reduce the severity/appearance of a flare up there and then but it doesn’t help you identify the reason for the flare up. It doesn’t help you prepare for next time or learn why this is happening to you. It’s a bandage on an injury without looking for the cause. At the Skin Matters conference, we were told that roughly 30% of a GP’s workload is taken up by skin conditions but that they only receive between 5-10 days of training on skin conditions (all of them!) in total. And the reason for that comes down to the fact that skin conditions are not life threatening so they are low on the priority list.
Obviously, I don’t expect to be given more time than a cancer patient, but the medical community needs to understand that just because a skin condition isn’t life threatening, it doesn’t mean it can’t kill you. The link between skin conditions, anxiety, and depression is undeniable, and sadly I know of a few cases where rosacea sufferers took their own lives due to an inability to cope with the condition.
The repercussions of a skin condition are felt in every aspect of your life. A recent study showed respondents a photo of person with clear skin and then showed the same person with typical signs of rosacea. They had to quickly choose which words they would associate with each image to find out their subconscious reactions. You can read the full results of the survey HERE, but here’s a summary. The person with signs of rosacea was seen to be: more unhealthy, more stressed, and more tired. But it’s not just about appearance, the woman with rosacea was deemed to look: less trustworthy, less successful, less reliable, less fun, and less intelligent. Those responding to the survey were less likely to hire them and less likely to want to be friends with them. That is absolutely devastating to read. And this is why I try so hard to talk about rosacea at every available opportunity – we need to end this awful belief that our appearance somehow reflects who we are as a person, how competent we are, how good a partner or friend we would be.
This photo was hard to take and is even harder to post. Every single time I take a photo of my bare skin I am still shocked, because this is not how I picture myself. When I imagine my face, I think of the girl on the right: happy, comfortable, wearing an amazing lipstick that screams confidence. So when I see the girl on the left, it's jarring. And it makes me upset. But I absolutely love seeing photos like these from other people. It shows that make up can be transformative and beautiful, but it's also so so much more than that. Wearing make up makes me feel stronger and helps me to be myself. To others this may sound silly or vain but to me it's a necessity. It gives me control over something I cannot change and that is so powerful. One of my missions this year is to try to pare back my make up in an attempt to feel more comfortable in my skin. But it's a slow process and one I'm really struggling with to be honest. I'd love to be more confident about the way I look, but for now I'm just trying to be a little kinder to myself. #talontedlexrosacea
At the conference I learnt so much about managing the emotional and psychological aspects of skin conditions, so I’ll be sharing those over the coming weeks. I think it’s easy to complain about unsatisfactory support from doctors, a lack of representation in the media, the hurtful assumptions of others, but it’s more helpful to do what we can to change those things ourselves. I will continue to put my red face out there, to talk about it until people understand it better, to promote ways to ease the issues associated with them – whether they’re physical or emotional.
I hope you found this blog post interesting, I’d love to hear your thoughts about it. The comments are open as always, but if you’d prefer to talk to me in private then you can email me, or message me on Facebook. If you are having suicidal thoughts or would just like to talk to a professional about how you are feeling, here are the contact details for the Samaritans.
If you’re interested in reading some more about the emotional impact of rosacea, here are some really interesting papers and articles on this topic:
- ‘Burden of Disease: The Psychosocial Impact of Rosacea on a Patient’s Quality of Life’
- ‘Perceptions on the Psychological Impact of Facial Erythema Associated with Rosacea: Results of International Survey’