Kathleen Gallant is a Board Member of the International Federation of Psoriasis Associations (IFPA), working on global psoriasis advocacy with the World Health Organization and United Nations agencies. Kathleen has had psoriasis since the age of 12, and in her mid-20s she was diagnosed with psoriatic arthritis. Now for PsoHappy, Kathleen shares her inspiring story on how she got involved in psoriasis and psoriatic arthritis advocacy and the main takeaways from the World Psoriasis Happiness Report 2017.
How I got involved in psoriasis and psoriatic arthritis advocacy
I think that the loneliness factor comes from the fact people don’t understand what it’s like to live with this disease unless you have it. My loneliness went away when I started being involved with other people living with psoriasis. Finally, I felt I was understood. My circle of friends that don’t have the disease didn’t understand me and I often felt really isolated. I became involved in the National Psoriasis Foundation (NPF) because I needed help so badly. There were no support groups in Pittsburgh, where I lived, and NPF suggested starting a support group there. It was unbelievable how my stress and loneliness levels completely changed, because finally I had met other people who shared exactly what I was going through and I was able to bring these people together. The first and second meetings were the most amazing experiences in my life; I can still feel the emotion of meeting other people living with psoriasis or psoriatic arthritis for the first time. I didn’t need the support anymore, because by volunteering with the NPF, I could make a change for other people. Every volunteer I meet, either abroad or in the USA – they are all the agents of change. These are people that suffer exactly what I do, but it doesn’t rule their life anymore and they are in charge of it.
By being involved, you’re no longer a prisoner of your disease
The commercials that are on US television help – starting with Phil Mickelson talking about psoriatic arthritis for five years. People see it and it helps. My number one tip for others struggling with this disease is to connect to psoriasis foundations and associations and meet with other patients – get involved in the future of your disease. It has changed the lives of people I know. It made them more comfortable in their skin, regardless of the level of severity, because they connected with other people that are like them. If somebody else understands you, you stop being so isolated and it can certainly help to reduce your stress level. Step out and get involved in your community — just knowing that you’re changing the future of your disease might help you tremendously.
Healthcare providers treat my body but not overall well-being
My doctors were very supportive and I could see their frustration when they couldn’t help me the way they wanted to. With all the treatments that I tried, I was either allergic to it or I simply couldn’t cover 95% of my body with the prescribed topicals. So I would leave the doctors with a sense of complete distress. There weren’t as effective treatments back then, not in comparison to what we have today. But I don’t remember one of my doctors being unsupportive. My healthcare specialists see people with a wide range of rheumatological or dermatological diseases, and they are treating my body but they don’t necessarily have the time to treat my overall well-being. My rheumatologist always wants to know how I am sleeping and how my stress levels are doing. The more stressed I am, the more my psoriatic arthritis is impacted. But I don’t know how much more we can put on the healthcare professionals’ shoulders. My healthcare professionals understand the loneliness and stress factors, but what can they do for that? All they can really do for those who are stressed or lonely is to reach out and encourage the patients to get involved with other people and patient organizations. The HCPs I interact are all extremely involved in psoriasis research and care and I think that for the regular patient reading this article, it doesn’t reflect the HCPs that they normally interact with.
Women have the pressure to be beautiful
We put the pressure on women to be beautiful and have great skin. I notice women’s skin more than anything else. My skin is damaged and you can see blood vessels because I used harsh topicals and have been sunbathing for 40 years. I don’t like to show my skin too much and I’m more self-conscious of my own skin when I see other women with beautiful skin. When I was younger and my psoriasis was severe, I had to wear long sleeves, long pants and skirts all the time. Certain fabrics can be abrasive and get stuck to psoriasis plaques, so I couldn’t be fashionable and dress the way my peers were dressing. It can be very stressful. I hated getting invitations to weddings or going on vacation because I was so stressed about what I was going to wear and how people were going to see me. Throughout my life, the number one thing strangers would and still ask is “What’s wrong with you – were you in a car accident?”, because my neck is fused from psoriatic arthritis damage. When my psoriasis is visible, I hear questions like “Is that contagious?” over and over again. I still can’t believe I get comments like this, and it shocks me that people can be so insensitive. Women have the pressure to be beautiful, and the reaction you get from other people when you have psoriasis or psoriatic arthritis is awful.
I think the World Psoriasis Happiness Report validates what people living with psoriasis are feeling – the distress and anxiety. It validates that other people have exactly the same emotions that you do, wherever you are in the world – you’re not alone.
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