Psoriatic Arthritis: Your Life Is Not On Countdown

I’m lying on my bed in the darkness. It’s nighttime and, as usual, my mind is crowded with thoughts such as, "How did today go? Why did that lady at the market frustrate me so much? What’s my tomorrow going to be like?" And, as if on cue, my heart beats quicker when I think, "What if my pain is worse tomorrow than it was today? What if I have another day where I can’t get out of bed?"

Wanting freedom with psoriatic arthritis

It’s funny, but now I’m thinking about paragliding. I haven’t checked that off my list yet--or climbing a mountain. The list goes on and on for me. It’s tiring to always feel like I’m racing towards a goal, trying to achieve it before I turn 30, 40, 50, or 60. I feel like I’m waiting for something to happen, as though my body were on a countdown timer towards the end.

Biology aside, I don't want to be driven by fear each morning. I want to open my eyes and be grateful for my life. I want to live in freedom with my psoriatic arthritis.

Managing expectations

People who’ve seen others with psoriatic arthritis or images on the internet may be misled to think that every person with PsA should look a certain way. We don't look the same at all. Some of us don’t have an outward appearance of this disease. I may have PsA that looks like another's, but the way psoriasis manifests on my skin is different from anyone else’s.

I stopped playing into stereotypes or expectations like this years ago because it doesn't help me to accept myself. I’ve long learned that I can't show people that I’m insecure or ashamed of the way I look. I would be confirming what they assume to be typical behavior of someone ‘like me’. This would give them a pass to treat me differently. Self-confidence brings about a better impression and commands a level of respect.

Finding freedom in my own decisions

A friend once shared her experience from having completed a paragliding course and it sounded really rough and tiring. Lots of bruises and cuts from falling during the first few days. I don't think this is for me; I need to preserve my skin and joint health. Sure, I’m not so foolish to say "Nothing’s going to stop me," but I’m not reckless at my age either. So, I made a little compromise: go walk a 5k.

Does that mean I’m not living freely? Of course not. There's no deadline that has been fixed for me nor a need to rush to achieve everything before a certain time. Everything changes with each new day, and embracing these unanticipated changes have been very liberating. I no longer feel the need to complete things I wanted to do when I was 30 or 40.

Making decisions while you are ill can be terrifying at times. We need to do careful planning to see how much we are capable of. My body showed me a long time ago that’s just not how life works. So, if you’re still living your life like it’s a ticking time bomb, I encourage you to see that the fuse never was lit.

How do you find freedom with psoriatic arthritis?