Welcome to another How Do I Look? interview! I am fascinated by skin, visible differences and how others view themselves. I have rosacea but I wanted to open the conversation about skin positivity and visible differences so I can cover (and educate myself about) many different topics. Every week I am going to be talking to an inspirational and interesting person in order to share their story and experiences to educate, help, and support others.
August is Psoriasis Action Month – the name changed from Psoriasis Awareness Month a few years ago and I LOVE it. I actually wrote a post about rejecting the word ‘awareness’ for this year’s Rosacea Awareness Month so maybe this is a sign of things to come for other conditions! I am so pleased to introduce you to the amazing Gemma Boak. I discovered her through Instagram (although weirdly we went to the same school and I was friends with her sister many moons ago… *starts humming ‘It’s A Small World After All’…) She is a former research scientist, with a speciality in Immunology, and a lifelong ‘Psoriasis warrior’. She blogs and podcasts about her psoriasis and gives amazing helpful, knowledgeable, but (most importantly) accessible information to her followers.
Tell me a little bit about your psoriasis?
“Psoriasis… so that’s like eczema right?” I usually say yes. But I am lying. I lie because, for some reason, people are less afraid of eczema. I think it’s because we talk about eczema so much more. Children often have eczema and children are cute and not scary at all. Eczema is part of our 21st-century vocabulary.
Psoriasis, on the other hand, tends to incite the feeling of fear and apprehension – because of a concern that it is contagious. There are five different types of psoriasis, and I have two of them. Common plaque, and guttate (see they even have really un-sexy names too). They have the same origins genetically but they look different on the skin: common plaques tend to be circular (although they can merge into each other to represent geographic continents) and flake, whereas guttate psoriasis looks more like red teardrops which – for me – itch endlessly. There is a form of psoriasis called erythrodermic, which can be life threatening, so its certainly not ‘just a skin condition’.
Psoriasis is an immune mediated disease (which is almost the same as an autoimmune disease) where the immune system triggers against the skin and unleashes a cascade of inflammatory chemicals into the body. In most peoples skin, the turnover of skin cells takes 21 days, but for someone with psoriasis it can take just 4 days to present their newborn skin cells to the world. This is one of the reasons the skin is so pink, and is the reason the parts of the skin with psoriasis patches on them flake so much, as the top layers of skin peel off so much faster than ‘normal’. It’s nothing to be scared of, though people can be afraid. These brand new skin cells just need nurturing like the premature babies they are. It also means black as a wardrobe option is out, because white flakes and black jumpers? Yikes.
I grew up with common plaque psoriasis. It started when I was five years old, triggered by an infection. We have learned to live with each other and most of the time my skin is calm and red scaly patches of skin associated with psoriasis are pale pink and scale-free (a result of diet and lifestyle interventions).
What are the common misconceptions, comments, or questions about psoriasis?
There was a granny who asked me in the post office queue why I was out of the house with chickenpox…
This is one of the most challenging aspects of living with psoriasis for me. The unexpected conversations about my skin while I am out and about trying to live my normal life. So as I wrestle my energetic toddler, I try to calmly explain that I have an auto-immune disorder that attacks my skin, and no, I do not have chickenpox – and no – it is NOT CONTAGIOUS.
What do you wish people knew about psoriasis?
You cannot catch it! If there is one thing I would change about psoriasis – it is this. For a person to develop psoriasis, they need a genetic predisposition (at the time of writing, there are over 60 genes connected to the condition) AND a triggering event (like an infection or emotional trauma). You cannot catch it.
Why do you think so little is known about it?
The fascinating thing is how common this is. 2-3% of the population have psoriasis, and yet the lack of awareness makes this a highly stigmatising skin condition, leading to higher levels of social isolation, anxiety, depression and suicide.
It’s so easy to feel alone. Because a lot of us hide. There were hundreds of kids in my school… yet I felt I was the only one with psoriasis. Statistically speaking, that will not have been true! Did we all feel alone as we tried to hide our skin? Isn’t that sad, that we feel we need to hide even though millions of us suffer?
Did growing up with psoriasis play a part in the career path you chose?
I studied Human Biology and specialised in Immunology. I then went on to a Masters degree, where I specialised in the genetics of the immune system. Part of my research looked at how parasitic wasps turn off the immune systems of their hosts – super interesting! I now blog and podcast about psoriasis… so yes, psoriasis has affected my career. I taught science for ten years, but I always come back to this. I am also about to qualify as a Nutritional therapist, because nutrition plays a massive part in this too.
I write about lesser-covered topics: how psoriasis affects dating, erectile dysfunction, personal style, and mental health. I interview teenagers with psoriasis to see how they navigated their teenage years and how they explained their diagnosis to their friends. I talk to child psychologists to find out how to raise resilient kids with psoriasis, and interview dermatologists – and ask them the questions most of us are too afraid to ask (or have tried and fobbed off). This is how my academic knowledge is used: to communicate what people living with psoriasis actually need to know.
I have three (soon to be four) children, and they all theoretically carry some of my psoriasis genes, so I want there to be the most straight-talking advice out there for them if they ever need it: all of the things I needed when growing up but never had access to.
I know there are lots of articles and posts about psoriasis online. But there is a lot of bad advice and dangerous protocols that I want my children to bypass if the time ever came for them to consult Dr. Google.
What are your thoughts on the media visibility of psoriasis?
I have mixed emotions on this subject. I LOVE the community aspect of social media, particularly on Instagram. Some hashtags help give confidence to show off our psoriatic skin. Holly Dillon, who started the #getyourskinout campaign is an essential one to try out on Instagram. The empowerment I get from her posts, and those who use her hashtag, is profoundly powerful. I use social media to connect with others like me – and at times, that helps.
The frustrating part of social media is the unwanted recommendations. The number of times I have opened up about my feelings or left a quote to inspire and someone has left me a message recommending a cream, or telling me to go vegan frustrates me. If I want suggestions, I will ask for recommendations. Mostly I want to be me, and me having psoriasis is me! People trying to fix that can take away some of my power that shouldn’t be theirs to take.
I think you have to be honest with yourself as to why you are on social media: if you are down and lonely, or you need a suggestion then Facebook forums are a source of solace and information. There is nowhere greater at 2 am when you want to peel your itching skin off and the rest of your support network is asleep.
But most of the time, it can be overwhelming. For me, at least. I can only answer peoples posts on community forums a few days a month before I start to get swamped emotionally. With a condition that can be managed, but never cured, there is always the potential for emotional overwhelm.
If you have consulted the medical community for your psoriasis, how were those experiences?
Yikes. Honestly? Until I started The Psoriasis Geek Podcast, I had never met one I like or that I would class as ‘good’.
The reality is that there is not enough time in a consultation for the kind of review we need living with psoriasis. Plus I feel there is a tendency as the ‘bread and butter’ of a dermatologist to be treated so rigidly along the NHS guidelines that there is little room for human feeling.
My depression was missed on several occasions. It turns out ‘Are you okay?’ is not a good enough question. Surprise! I have been lying to that question since I was five years old. Maybe you have too?
I feel so strongly that a good relationship with your doctor is possible if you know how to work them and the system. It’s just that no one teaches us how to be chronically ill.
On the podcast I dedicated several episodes to this topic: I interviewed G.P Dr Dan Maggs on how to get the most out of your GP (they can do a lot more than we think), Alisha Briggs on getting the most out of your dermatologist and psycho-dermatologist, Dr Jon Goulding.
How do you deal with bad days?
For me, there are different types of bad days.
The ‘Every So Often’ bad day: These are the bad days, when the scaling is down my face and I want to crawl under the duvet and hide. These are the days where I need positive affirmations: I am beautiful, I am more than my psoriasis. I give myself a good talking to: Girl, you just need a good shower (and shampoo).
How to cope with these days? Invest time in softening the scaling in the shower, washing your hair and giving yourself a loving head massage while you’re at it. Having a cup of tea while the excess heat leaves your face, and apply make-up – if you want to. I love tinted moisturisers as they are less likely to collect in the cracks, my favourite right now is by Green People. I’m obsessed with Bobbi Brown’s foundation stick too, it’s surprisingly uncloggy. I try to go natural where possible, fragrance is a big no-no. But when it comes to my low maintenance style I will take non-natural mascara over rubbing black smudges from under my eyes several times a day (because its not a good look and because the friction actually triggers psoriasis in my eyelids). I’m currently using a mascara by Benefit. Be late for work if you need to be. You will achieve more if you don’t feel you hate yourself.
The ‘Every Single Day’ bad day: Feeling down every day? Does getting out of bed feel like walking through treacle? Stopped listening to music on your way to work or the shops (and haven’t noticed until now?) You may be depressed. No biggie – it’s really crappy I’m not going to lie, but once you say those words to your GP, things start to get better. Sometimes we worry our GP will fill us full of pills, but mine supported my decision to try to improve without medication and utilise psychotherapy instead. Psychotherapy is the best. Everyone should do it. I want to send my kids, but I think I will wait until I have made more parenting mistakes before I send them off. Maybe it’s a weird 13th birthday present!?
Living with psoriasis can be so exhausting, chipping away daily. I think preventative psychotherapy would save the NHS billions.
The ‘Bad Flare’ day: The flare days are challenging on a whole other level. These are the bad days where you can’t wear clothes because your skin is burning, flaking, and bleeding. These are the days where you may have bad, bad thoughts you never thought you would have. I sat looking at a razor blade one morning wondering if the pain of cutting would be better than the itch (I didn’t do it as I knew this would be a slippery slope for me). When you get here, you need help ASAP.
You can skip the queues at your GP and your Dermatology office by being a persistent bitch. Call them every day explaining your circumstances explicitly, and within a week they will be calling you offering appointments. If you feel suicidal, then you need to call a helpline, and you will be whipped into urgent care. Just do not suffer in silence. You do not need to. You may feel alone, but millions have us have been there too. And a lot of us are on Facebook!
Any tips for dealing with flare ups?
My favourite (non-traditional) things to do to cope with burning, flaring skin include:
- Stand outside naked – the cold moves the blood away from the skin, which reduces itching. Obviously you need to not be in public, or you will be arrested. Quite rightly so.
- Use balms that have been kept in the fridge. I usually alternate aloe vera gel with a menthol balm. The menthol balm doesn’t stop the itching, but it has a strange cold burn, which is weirdly distracting and gives you some mental space. Please do check with your doctor as I’m pretty sure that it’s not good for psoriasis, it’s just my personal favourite coping technique.
- If you can, sack off life and fly to somewhere sunny (my psoriasis clears with UV treatment). My doctor has even signed me off work to go on holiday before – true story! And if you’re open with your employer, those with a drop of sense will make the right decision when presented with “would you rather me have five days off on this specified date, or random days off over the next few months followed by a possible breakdown?” And honestly, the holiday option sounds so much more sensible. Are you worried about your co-workers? Just wear shorts and a t-shirt to work one day, and they will be oozing with empathy (as long as you can cope with watching them squirm as they overcome the desire to start itching themselves). Note: This only works if you have the sort of psoriasis that responds well to UV light (some psoriatics get worse in the sun – this is not for you. Maybe a relaxing COLD spa in Norway?)
My final thoughts on psoriasis? As long as I know that I am more than my psoriasis – my life is happy and fulfilling. Those times psoriasis starts to take over, I know I need to ask for help. No one needs to be a martyr, and we heal much quicker as a team effort. Use your friends and be honest with yourself. If you don’t have anyone you can talk openly to the online psoriasis community is the best.
Read the other posts in my How Do I Look? series here:
- MICHELLE talking about her scars;
- SOFIA talking about her acne;
- NATALIE talking about vitiligo;
- SUSIE on her Telogen Effluvium (hair loss);
- AMY on her port wine stain birthmark;
- AMARA on eczema;
- GRACE on her scars;
- JUDY on her sensitive skin;
- SHANKAR on his Vitiligo;
- P. on their Acne Conglobata;
- and SOPHIE on her Trichotillomania.
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