The reality of facing psoriatic arthritis as a young adult
For some people, a psoriatic arthritis (PsA) diagnosis may signify devastation. A nasty surprise they’d never expected. For others, it brings relief—finally—an answer, treatment, and hope. Either way, we can all agree that diagnosis marked a pivotal moment in our lives. A time we can all point to and say, “That’s where it all changed.” However, I’ve learned that change isn’t always a bad thing.
A psoriatic arthritis diagnosis affected everyone in my life, and I mean everyone. Even the dog! She couldn’t fathom why I wouldn’t (couldn’t) bring her for a walk anymore. Every morning I was met with guilt at the fact that I couldn’t bring my best friend on her daily outing. My mother took over, but the dog wasn’t too impressed with her new exercise buddy.
Before my treatment started to work, when I was wracked with pain on a daily basis, my mother’s role shifted from parent to caregiver. She did everything for me. She cooked, cleaned and even helped me get dressed. Not many people envision their parents having to dress them in their twenties and thirties!
This, again, brought a lot of guilt with it. She’d raised me. She shouldn’t have to take care of me all over again as an adult, I thought. Have you noticed that guilt is a common theme here? It’s what happens when you have to rely on others when you’re so used to being independent.
Once my treatment plan started to take shape, and I could fend for myself again, those feelings subsided, but our closeness remained. My illness brought us together as a family. I realised how important support is, so don’t be afraid to ask for it. There is no shame in needing help.
The 9-5 can be exhausting for a healthy person, never mind someone with joint pain and fatigue. After months of suffering, I finally admitted to myself that I just couldn’t do it anymore. I would spend most evenings either crying in pain or sleeping because I was just so unbelievably exhausted. Handing in my notice was one of the saddest days of my life. I spent three years in college to do this job, and now it was all over. More guilt.
Again, after treatment kicked in, I gained some perspective. Work was part of me… a big part, but it wasn’t all of me. There was more to me than my job. I just needed to figure out who I was as a person.
I sat down and spent time really thinking about what I was good at and how I could manage to use my talents and manage my PsA. I discovered I had a talent for writing and editing. This would allow me to work from home and set my own hours. Success!
Never write yourself off completely. Everyone is good at something; you just need to find that something. You might not feel like it right now, especially if you’re in the middle of a flare, but illness never means lack of worth.
Friendships and Relationships
Losing yourself to illness is hard, but losing friends and loved ones is just as difficult. During the early stages, when my psoriatic arthritis was very active, I felt as if life had left me behind. My friends were dressing up, going out, and having fun. I was stuck at home in bed with three hot water bottles on my joints! It made me bitter and jealous. Why did they deserve to have a ‘normal’ life? This affected my relationship (which eventually ended) because I pushed everyone away. I felt that if I shut them out; they wouldn’t have the opportunity to leave me, because I’d do it first.
Loneliness is a curse. Never let your mind convince you that people don’t care. They do. Thankfully, I realised this before it affected mental health too badly. I started a blog, and I found others suffering with chronic illness. I reached out to them, and I discovered all our situations were similar. It’s an amazing feel to find people who just know what you’re going through. I also re-connected with old friends I’d lost touch with. You’d be surprised how forgiving people are. I explained why I distanced myself, and they understood.
Psoriatic arthritis changed me. I’m not the same person I was before diagnosis, but I’ve come to realise that that’s OK. I might be tired, sore and slow sometimes—but I’m also more empathetic, caring and understanding.