What I Wish More People Knew About Living with Guttate and Plaque Psoriasis
I have had psoriasis for 30 years, and during this time there have been a few things that have come up repeatedly that I wish more people knew.
You can have more than one type of psoriasis at the same time, and they can behave differently
People living with psoriasis and psoriatic arthritis are well aware of this but did you know you can have more than one type of psoriasis? I was surprised after living with plaque psoriasis for most of my life to wake up one morning covered head to toe in guttate psoriasis.
I have plaque psoriasis all of the time, but my guttate psoriasis usually only appears when I have an infection. I find guttate psoriasis much harder to live with because it is itchier and the flares are more unpredictable, aggressive and rapid in onset. Guttate psoriasis can also transform into plaque psoriasis which seems a bit sneaky and unfair, but it is not erythrodermic so I will always be grateful of that.
The result of having skin conditions that may seem to be the same to friends, but that behave quite differently means that sometimes my skin can look terrible and I am coping well, and other times I can look the same degree of terrible and be on the verge of a mental breakdown. I need different coping strategies to manage and they need different strategies to support me. Communication is key.
The other advantage of explaining your skin condition in detail to friends, colleagues and fellow playground dwellers is that when they or their child has tonsillitis they know to give the heads up well in advance of you coming within the zone of danger.
Psoriasis is not a skin condition, it affects the skin.
Yes, you can see it on my skin, but if you looked at the inflammation inside my body (as was done recently with a PET scan)1, you would see it affects most of my insides too. Internal inflammation is not a joke, it is a serious problem and the precursor for many conditions such as heart disease and diabetes.2
So when people ask me if I have tried moisturizer, I am smiling on the outside, but inside I am battling with a range of emotions which I usually manage to keep in check. Usually. I know they are trying to be helpful.
Psoriasis itches and can be all-consuming
Sometimes my psoriasis will itch all of the time. When psoriasis does itch, it can destroy the day/night/ longer periods of my life. It is difficult to concentrate on anything else when I itch. There is this moment as I start scratching which I can only describe as euphoric. I am sure if I dug a little deeper there would be some research somewhere that describes a release of addictive hormones- may be a surge of serotonin because it is utterly blissful. It is then followed by worse itching. This is why I appreciate people reminding me not to itch, but at the same time resent them.
Psoriasis affects my life from the moment I wake up
Usually upon waking I check my arms with the ‘have I miraculously woken up clear’ question. Then from there an assessment of my ear plaques to determine whether I need to soak the dry skin in the shower to remove it and then consider what I will wear over the rest of my body. Unlike most people- there have been days where there genuinely is nothing I can wear in my wardrobe. I found giving up traditional employment to work from home made this process much less stressful.
Living with psoriasis is expensive
We need a lot of moisturizers, yes. But when healing with a chronic inflammatory condition, we are likely to seek additional support; things like acupuncture, herbal medicine, and a nutritionist. These costs are ongoing. These are costs which we have to accept, and it is difficult for people sometimes to understand that it is as essential for us to go for yoga for example, as it is for someone to get anti-histamines. We need to invest, and there is a significant financial burden.
Psoriasis is visible, but that doesn't mean I want to talk about it
I get upset or frustrated (which one depends on how well I am coping that particular day) when people come and start a conversation with me along the lines of ‘your skin looks good at the moment.’ Unless that person is close enough to me for me to see them in the school playground and say, ‘gosh your eye bags don't look so bad today’ then indeed they should lead with something else. I get that they are being nice, but all they are doing is reminding me that when people see me, they see my psoriasis first. Can we talk about me as a person instead?
Plaque psoriasis affects significant life decisions
When I was around 13, I was moved to a different school. I did not want to go, but on the first day when I was stood in that first assembly, I felt utter relief. Why may you be wondering? The school blazer was grey. Not even a bland grey, a strange woolen affair with flecks of white and other flake friendly camouflage. Never again would I wear black, the torture of the repeated shaking of the neckline to release any loose scalp flaking. Don't get me started on black bedsheets, that is a horror I am fortunate I did not need to endure.
I recently wrote about how psoriasis has shaped my wedding planning. I do not resent these changes at all if anything they have made me more imaginative.
Sometimes psoriasis makes me feel like a bore
Certain things trigger itching for me, and so, for the most part, I tend to avoid them. The problem is these things tend to be fun and commonly done with friends like drinking red wine or eating cake. This means that I have to pay attention to what I eat and drink all of the time and usually means I am the one person who doesn't want to go in on the bottle of prosecco and influences where we can go out for food. I don't want to be awkward, I have no choice, and if I am with people who do not know me well it can feel isolating.
Do you anxiously anticipate a psoriasis relapse?