When you think about psoriatic arthritis, or any type of arthritis, you think of the physical part of it. However, any chronic illness has a mental aspect that is not talked about enough. Doctors mention it some, but we as patients don’t.
Psoriatic arthritis is different from other rheumatic diseases because of the skin component. That is what I will be talking about first. Not everyone has the same level of skin involvement. I was one of those with a good amount of skin involvement. It was the face involvement that really got me. For some reason, mirrors are everywhere. You don’t realize just how many mirrors exist until you want to avoid them. Another thing that gets you is (probably well-meaning) people mention it. Going back to the previous sentence, I have a mirror and two eyes; I was well aware my skin was very patchy and scaly. It is very disheartening to see your previously clear and smooth skin turn into something out of a science fiction movie. At least that’s how I saw it. I’m glad my psoriasis wasn’t present these days. I was lucky enough to exist in the times before the prevalence of camera phones. Because of that and because of being extremely self-conscious, very few pictures exist of me from that time. I wouldn’t want them to exist. It is tough enough to deal with the physical effects of psoriasis, but dealing with the mental aspect of it was just as difficult.
I am thankful for my medications that have helped clear up the psoriasis. It is basically under control now. The arthritis, however, is a different story. It’s not fully under control. I have times of lower disease activity and times of higher disease activity. I was diagnosed with arthritis in my late 20s, but I had symptoms for a few years before that. You aren’t supposed to have trouble standing up from a chair in your 20s. It’s not supposed to hurt getting out of your car in your 20s. At times, I think my family was more mentally affected by my arthritis than I was. I was just going about my business; they had to see me struggling. But since this blog is about me, let’s talk about me. Yes, I was mentally affected by my arthritis and I continue to be. At the beginning, I was trying to understand this new normal. Why was I always in pain? Why was I struggling to walk? Why did this happen to me? I had no answers, and some 20 years later, I still don’t have answers.
The mental toll now is much different than it was early on. These days, I think, "Why am I still in so much pain?" "Why do I still struggle to walk at times?" "Why is this still happening to me?" I guess those are the same, but I do have some different thoughts as well. Since my disease is still under fairly decent control with medication, I have many days that are fine or OK enough or even good, sometimes normal. Then I have bad days and I have flares. That’s where my thoughts change. I think to myself: “Is this just a flare, or has my medication stopped working?” “Am I able to function well enough today?” “What do I need to do to get by?” I also think, “Do others see me struggling?” While I am completely fine talking about my arthritis, that doesn’t mean that I want people to see me physically struggle with it. Yeah, I didn’t say my mind made sense, but it is what it is.
Let me explain: When I’m not well, I’m the type that likes to be left alone and just get through it. I’ve made it through mono, the flu, pneumonia, and numerous sinus infections alone. That’s because I had to stay home and be quarantined. I break the whiny-when-sick stereotype of many men. Arthritis though, I’m just achy, and I still have to function out in the world. I have had times where I have to have people help me stand up or help me up or down steps. That just guts me. When I have to ask for help, I feel mentally defeated and that the arthritis has won that round.
The other mental hurdle between me and arthritis is that I live alone. I worry that I won’t be able to function well enough during a flare. I think during those times that I should have listened to Mama and made sure to always have at least something I can fix in case I can’t go out or if my medication side effects make me not feel like going out. Finally, I worry what the future holds. Will this get worse? Will I be able to live and function alone?
Not everyone with a chronic disease or even with psoriatic arthritis thinks the same things. But I have a feeling many of us have some version of these questions going through our heads. So in addition to the physical we endure, we have to deal with the chronic mental and emotional aspects of this disease. I’ve been lucky enough to have good support from family and friends on this. But if you are struggling to deal with the mental and emotional aspects of your disease, please let your medical professional know.
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Photo Credit: MarioGuti / E+ via Getty Images
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