The Upside of Living with Psoriasis

Have you ever sat in the disabled seat on a busy bus or train? I have and it was awful. Do you know what was more awful? Standing up. Of course, I should sit- this is the only seat available, and I feel like I am going to die and be sick at the same time. Only on this day, I am 30 years old and look perfectly fit and well. I looked at the floor, I could feel people staring at me, I was paranoid that people were saying things because I did not look like I needed to be there.

This made me realize one thing: things are not always what they seem on the outside.

I did not have arthritis, or lupus or any of the other myriad of invisible but profoundly disabling diseases, but the beginnings of severe morning sickness. How many times have we judged that person though? The one who parks in the disabled bay and walks with apparent ease into the shops.

Psoriasis teaches us compassion

Psoriasis is a disease which teaches us so much about the challenges people face, that are invisible to the rest of the world, and in many ways can teach us to be better people. It has for me anyway. I see the best in people; if someone is rude or selfish, I consider that they may be in pain, anxious as they await a test result, or struggling with their physical and/or mental symptoms.

We are curators of our social experiences

A curator may sound a little dramatic, but I grew up with psoriasis. There are so many films and TV shows where teenage boys and girls joke about how to get rid of unwanted erections. Just picture her all covered in scales and scabs. I would sit there cringing… ‘so…me then?’

Then there were the sleepovers; the flaking and bleeding on someone else's bedsheets. What would they say about me at school?

The solution to this was simple. Stop watching trashy TV and surround myself with people who have better things to do with their time than gossip. My friendship group at school probably made us look like outcasts, and I would want it no other way. We avoided the social hubs, and we did what we pleased.

Living with a chronic and visible disease we choose our friends wisely and our lives are richer for it.

We are more open to exploring mental health support

According to research psoriasis affects quality of life to the same extent (or more) as conditions such as ischemic heart disease and diabetes.¹ The impact of living with psoriasis is well documented, and discussions around how we are coping should be routine.

Communities are, in my experience are much better at talking about this on an everyday level than medical staff, with people talking openly about how they are struggling alongside people sharing effective strategies (or at least strategies that were effective for them) on a daily basis.

Sadly mental health challenges like depression are stigmatizing, and this can lead to it being talked about behind closed doors; only confiding to our closest friend and our therapist (if we have one). As a community, the prevalence of mental health challenge is so much higher, and we experience such acute difficulties during a flare that we talk so much more openly about how we are feeling and seek out strategies we can use to help us get through. This empowering behavior of seeking solutions to our challenges can help us be more open to seeking help when we experience problems in other areas of our lives. Couples counseling for example.

We are useful in a crisis

We talk less than most people when a friend is in crisis, and give less unsolicited advice. We know what it is like to have other peoples solutions forced on us and we understand that sometimes, people just need to be heard. I think you will agree that the most frustrating end to an open and honest outlay of your challenges with psoriasis is someone suggesting a moisturizer their mum tried.Listening and only giving advice when asked is a skill, one that is underdeveloped and highly important in today's fast-paced society.

We are great problem solvers

Thinking outside the box is what we do best. In my experience, we rarely get what we want from our doctors, so we are familiar with doing our own research and finding alternative solutions to our problems. Even when we are happy to follow our doctors' advice implicitly, there is trial and error as we navigate different treatment protocols, drug costs, insurance options and the reducing effectiveness of our favorite drugs over time.

We know a nightshade is not always a lamp (and this is a good thing)

If you start to look at diets for psoriasis, it will not take you long to find that the nightshade family are commonly painted as The Villains (and before you think I am cynical I am actually sensitive to two members of the family). The nightshade family includes potatoes, tomatoes, chili, aubergine and other incredibly tasty ingredients for some of our favorite dishes.

So how does this make us a better person? It motivates us to learn more about food.

We start looking at ingredients. We learn that the pasta bolognese sauce we have been buying with pictures of tomatoes and basil on the front actually contains several ingredients we have never heard of and that there is sugar added to the jar of pureed vegetables you bought for your baby.

We are not naive about healthcare

We have taken many drugs (usually) and have experienced side effects (or have at least been told about some of them). We have seen that some things work and that some things do not. We have seen the importance of having a good relationship with our doctors and how crucial it is to stick our heads above the crowd to be heard and to make sure there is an effective follow-up.

So when you have a friend or family member who needs help. There is no naive wallowing in the background. We know how to get what we need, and we know we have to be proactive to get it. This means our friends and family get the care they need when they need it.