What Is It Like to Live With Psoriatic Arthritis?

 by Helen Vivienne Fletcher
Little Miss Autoimmune

When I was 19, I was diagnosed with Psoriatic Arthritis. I had had pain and other symptoms since age nine but, as the Psoriasis skin symptoms had been misdiagnosed, it was difficult for my family doctor to recognise the Arthritic side of it.

            All of my joints are affected by the disease, causing pain and swelling, along with the connective tissue between my ribs, between my hips, and in my throat and mouth. I had patches of psoriasis on my arms and legs, as a child and teenager, though these have been well controlled in my twenties, so I only get minor flare ups. I regularly experience systemic symptoms such as fatigue, nausea, dizziness and difficulty breathing.

            Growing up with Psoriatic Arthritis was difficult for me, particularly as I did not have a diagnosis. The many pains I experienced were put off as “growing pains” or “childhood migraines” and then finally dismissed completely as attention seeking. I experienced many mystery symptoms and illnesses as a teenager, which I now realise were most likely related to the undiagnosed disease. Unfortunately, this story is not uncommon. It often takes people with forms of autoimmune arthritis months or even years to get diagnosed.

            Being diagnosed with a serious illness can be scary, especially when you are young. I know it was very distressing for my parents when I was sick as a child too. However, receiving a diagnosis can also be a relief, as it means you finally have an answer and can start treatment and working towards getting the disease under control. My advice to anyone newly diagnosed, or to the parents of newly diagnosed children, would be to educate yourselves about the disease. Reading information about a diagnosis can be scary, but it really helps to know what to expect and to be able to advocate for yourself in the medical world. For a long time, I was too scared to look at anything about Psoriatic Arthritis online, but when I did the information I found was very helpful. I was able to make more informed choices about medication and complimentary therapies, as I understood more about what the treatments were for.

            Finding support with other patients or other parents, in real life or online can be very helpful. Often they will be able to give advice or ideas that your doctors can’t, or will be able to point you in the right direction for where to find help. Personally, I volunteer for the International Autoimmune Arthritis Movement, and I have found being involved with this organisation very rewarding.

               With the right medications, accompanied by diet and exercise, I am able to manage my disease. It doesn’t ever go away – I still have to take care of myself and not overdo things. Psoriatic Arthritis has meant my goals have changed, but it has not meant I’ve stopped making goals or enjoying life.