On the psychological cost of living with rosacea

Guilt and shame

Those who have seen me recently on a Zoom call might have noticed my big red face. It’s not because I’ve been bingeing on food or alcohol. I haven’t binged on food since my early twenties or majorly binged on alcohol for four years. The last time I had nearly a bottle of wine was last December and I had such a horrendous night of insomnia with a rapid heartbeat and a minor anxiety attack that I’m sure it was the last. My heart has demanded so.

Still, the big red face persists. The critical part of me tells me it’s a punishment for my past bingeing. The physical sign of my guilt and shame. The more rational part tells me that rosacea is a chronic skin condition of cause unknown that can be caused to flare up by a variety of stressors. 

What is Rosacea?

The term rosacea comes from the Latin roseaceus and means ‘rose-coloured’ or ‘made of roses’. On the face of it, it’s an appealing term. Unless it refers to the colour of your face. It was first described in the 14th century by a French surgeon called Dr. Guy de Chauliac who named it goutterose, from the Latin gutta rosa, in relation to the primary symptom of facial flushing.

Rosacea is brought about by changes in vasculature (increased vasodilation and vascular endothelial growth) and an increased immune response. These lead to the defining symptoms – facial redness, visible blood vessels, thickening of the skin, burning and stinging, and bumps and pimples. The changes in your veins combined with the swelling make your face bigger and redder.

To boot, some people also get ocular rosacea (irritated eyes) and I am one of them. Having small itchy red eyes makes my big red face look even worse. 

Common stressors are: sunlight, hot, cold and windy weather, hot baths, hot drinks, spicy and histamine-rich food, alcohol, skin products, exercise and stress.

From Rosy Cheeks to Rosacea

I believe my rosacea has always been there to some degree. From when I was a child, people commented on my ‘rosy cheeks. This made me blush even more. I got called ‘Farmer Giles’ along with ‘Pig’. I had big red cheeks and a pot belly. My facial redness went hand-in-hand with my fatness.

When I started restricting my diet, I began wearing foundation. When I was at my thinnest, in my goth years, I had a plastered and powdered porcelain face. The fat child with her chubby red cheeks was completely erased. 

Yet, my swapping of binge eating for binge drinking took its toll. I noticed the heat in my face began to rise with the very first drink and the ruddiness began to shine through my foundation, particularly when I got a taste for red wine. 

I believe alcohol had a role in the progression from red cheeks to rosacea. The other trigger was exercising excessively and working outdoors in all weathers. I ran half marathons in hail storms and on hot summer days. I worked on the mosslands in winter gales and bashed balsam in the July heat.

I first noticed how red my face had got after my first major flare-up after being out in the sun all day doing an ecological survey on a former mossland. This was when I first began to suspect I had rosacea.

It wasn’t until I had finished working in ecology and saw a video recording of a talk I had given for Land Sea Sky Travel that I realised how bad I looked. At this point, I started researching rosacea and found out it is chronic and incurable.

Chronic and Incurable

I got a formal diagnosis from my surgery after seeing a couple of nurses and a GP. The GP I saw had rosacea herself. She said the only effective treatment is taking antibiotics for the six months of summer when it is worst. I decided against this due to the effects on my gut microbiota. 

Since then, I’ve tried using just Simple products, as advised. My rosacea has still worsened. I’ve tried some holistic skincare products that made it worse. I have more recently discovered Rosalique, who specialise in natural products for rosacea prone skin, and their cleanser and day and night creams have helped a little. I tried their foundation, which goes on green, and neutralises redness. It worked, but made my rosacea flare up afterwards, so is not a solution. 

I’ve done my best to cut and limit stressors. I no longer drink hot drinks or alcohol. I don’t have my baths or showers too hot. I’ve swapped running for four strength training sessions and two cardio sessions. I avoid chilli powder. 

Unfortunately, I cannot cut stress or anxiety, major contributing factors.

Zoom Face and my Inner Bully

The time my rosacea flares up the worst is in social situations. I get paranoid about people staring at my big red face and seeing it as a sign that I have been binge eating or drinking due to my past and cultural associations.

Zoom doesn’t help. I only recently found out about the phenomenon of Zoom Face. The wide-screen camera makes your face appear a lot wider. Having your laptop on your desk with the screen tilted creates a double chin effect. Default web cameras make your face redder to adjust for poor lighting.

These effects can be seen in the differences between Zoom and Photo Booth.

I look absolutely terrible on Zoom and try to ignore my face, but if I catch a glimpse of it and wonder what other people are thinking, it makes me even redder. 

This vicious cycle has led to a flare-up of my eating disorder voice telling me that if I exercise a bit more and eat a bit less my face will be paler and thinner. 

My inner bully is very good at hijacking my creativity and turning it against me. It tells me I look like ‘an angry beetroot’ and ‘a demented red hamster’ and that if I over-eat (ie. eat some extra nuts if I exercise more) my cheeks will get bigger and redder like Pinnochio’s nose and everyone will know I’ve been bingeing.

I know it’s lying because no amount of weight loss can undo the changes in my vasculature or the swelling and thickening of my skin due to my immune response. 

I’m also aware that the person I am speaking to is more likely to think I’m overheating, or have been exercising, or have rosacea, rather than that I’ve been bingeing. And that they’re more likely to be thinking their own thoughts and focusing on the topic we are discussing rather than staring at my big red face. 

But it’s still very difficult to live with. I’m aware there’s an element of body dysmorphia too as a remaining psychological eating disorder symptom.

Psychological and Spiritual Coping Methods

I’ve been doing my best to counter my guilt and shame with the knowledge that my bingeing wasn’t entirely my fault. It began due to bullying and my parents giving me chocolate rather than comforting me. I’m also genetically predisposed to diabetes. Together, these things led to me being addicted to the sugar in chocolate and later in alcohol. I’ve done well to get over both these addictions (albeit at the cost of developing a restrictive eating disorder).

I’ve attempted to decolonise my mind of the narratives of fatphobia and white supremacy that drive my discomfort at having a big red face and lie behind the anorexigenic ideals of thinness and whiteness.

In terms of advice from my Gods, I’ve been told to ‘be calm’ and ‘embody sanctuary’. This won’t get rid of my rosacea, but might help to calm my nervous system and dampen my overactive immune response.

I’ve found that daily meditation helps. I’ve tried giving metta ‘loving kindness’ to the bingeing parts of myself and practicing self-acceptance and self-compassion.

I’ve tried to be kinder to my face. Spending more money on nurturing natural products. Instead of scrubbing at it cleansing gently. Not scratching in the night.

I’m hoping that being open about my condition and providing an explanation of what’s happening on the outside and within here will relieve some of the guilt, shame and paranoia and lessen the voice of my inner bully and its hold.