The Less Obvious Struggles Living with Psoriasis
The struggles of psoriasis may look obvious to friends and family. But they have no idea what is going on.
So what should you be aware of if you are close to someone with psoriasis?
Most people think psoriasis is a skin disease ‘just like eczema.’
Like psoriasis, eczema has a link to an immune system that’s not doing what it should. It is also itchy, affects the skin and can cause extreme distress. The difference is that psoriasis is immune-mediated from within, leading to systemic inflammation which increases our chances of developing psoriatic arthritis, heart disease, and metabolic disease. Having to endure a conversation about how I should try the moisturizer that cleared someones daughter’s eczema when I am in a full body infection triggered auto-immune flare is agonizing.
We are a marketer’s dream
Harvard Business School Professor Gerald Zaltman states that 95% of our purchasing decisions are made subconsciously based on our emotional response, and these decisions are then backed up with facts.1 I pride myself of being well informed before a purchase, but an honest reflection on the supplements at the back of my wardrobe confirms that perhaps I am not always honest with myself at the point of purchase.
According to Geoffrey James, guest editor at Inc. magazine, there are six critical emotions involved in the sales process; fear, altruism, envy, pride, and shame. He says that every successful sales approach creates one or more of these emotions in the customer. I am vulnerable to buying products to improve my skin when I am flaring when I have an upcoming event that requires reduced clothing such as dates and hot weather or my skin has cracked and is sore. This is why I get so upset when people use before and after pictures to sell creams when they use the word cure. These things elicit emotional responses and reduce the use of the logical parts of the brain that tells us what we know deep down, that this is not going to work; but we buy it anyway, just in case…
For this reason, please be wary when showing us the ‘miracle cure’ you just read about in the newspaper or on Facebook. You may think it is helpful but in reality you are reminding us we have psoriasis when we are going about our everyday lives, and whilst we are happy that the girl in the Daily Mail newspaper cleared her psoriasis by taking a multivitamin she got at the supermarket I really don’t think that is going to work for me.
We want to heal naturally
There is little support from medical practitioners, so we tend to go it alone, which is usually not a great idea. Using books written by medical doctors is fine for most people, but someone on a forum is telling you to order herbal supplements from China which arrives loose in a sandwich bag, is not so good.
Additional problems occur when your doctor in unsupportive of alternative healing approaches, which can mean a lack of openness about what you are doing ‘on the side.’ One of the many problems with this breakdown in communication is that some herbal supplements can interfere with the way that prescription medication works, so if you are taking medication, you need to fess up ASAP! Most of us who are experimenting with natural healing will find ourselves inside forums and Facebook groups at some time or another. These can be excellent places for advice but can also be breeding grounds for misinformation. Having an honest chat with your medical practitioner can help you find out what is safe for you to try. It can be a nightmare trying to find the right specialist, but it will be worth it when you do.
Assembling a broad healthcare team
Another reason we so often end up taking advice from strangers is that hiring additional people such as nutritionists and acupuncturists can end up being very expensive. I employed an acupuncturist, and it took months of treatment to clear the psoriasis on my legs. That is a significant cumulative cost. I would love to go back to her, but the number of treatments I would need for it to be effective makes it prohibitive at present. This is the reason I started interviewing experts recently for The Psoriasis Podcast, to try to get some of that expertise out into the population for free. If alternative therapies are outside of your budget then look at people you know, is anyone qualified in an area that would enrich your healthcare team? Even a friend who is a good listener can help by becoming your counselor. If you have a skill, you may be able to set up a skill share arrangement.
We know there is a genetic component
Knowing that psoriasis has a genetic component can make some elements of life a little more challenging. The decision to have children for example. Do you want to pass the risk of psoriasis onto another generation? It is a big question we rarely talk about.
This affected dating for me. I wondered if I was classed as damaged goods, I questioned whether anyone would want to have sex with me, flaky red skin is not very sexy, is it? Then this one. This was my classic fear as someone who has known they wanted children since forever; would anyone want to let me contaminate their gene pool? I’m sure a psychologist would have a field day with my choice of words.
It turns out that most people are not affected by my psoriasis at all. People did want to have sex with me, and I now have three children, so I have to conclude from that, that I was my own worst enemy. The thing is now I have had children it is my responsibility to teach them the skills they need to reduce their chance of triggering the disease. Teaching them about nutrition and stress management.
I spend my life living in fear of a flare
Psoriasis did not affect me too much when I was younger. I could go a whole half day without even thinking about it. We used the word flare in my house growing up to mean when my skin was burning, or I got a flurry of new spots. Never had I ever anticipated what a true flare was. I became ill with tonsillitis for the first time in my early 30’s. Then an itchy bump on my thumb. Within three days I was covered head to toe in both plaque and guttate psoriasis. I couldn’t sleep, I could barely eat. It was horrific. It took time, but I slowly healed with the help of systemic medication and hoped that would be the end of it. No, precisely 12 months later the same thing happened again, except this time I was pregnant. No systemic drugs for me. My time in a full frontal attack was traumatizing, it took my mental health to the brink. The long-term consequences of this are that I live in almost constant fear of this happening again. Most of the changes I have made since then have been good. I left my stressful job, I eat more wholesome meals, and I stand up for myself to ensure I get some time out for self-care. But… there are other behaviors I have had to address. The avoidance of busy places, the canceling of playdates when I have seen their children is ill and almost constant thoughts of prevention. My doctor told me ‘thoughts of psoriasis have pervaded every aspect of your life’ and that was an accurate assessment. But letting go is hard.
So what do I want to say to friends and family? Ask me how I am, make me feel safe when I talk to you so when I need you, I will confide in you the truth. Please remember I am a person first; and just because my skin is the first thing you notice when you see me, it doesn’t need to be the first thing we talk about.