Keeping Me Me
Last updated: April 2023
I was diagnosed with AS about a year ago. Two months ago, I switched from injections to infusions and have been in a horrible flare waiting for the new medication to bring relief. My rheumatologist says my AS is “aggressive,”… and it sure feels like it.
When I first got diagnosed, it was bittersweet. Waves of relief for being heard by a doctor after years of misdiagnosis and dismissal, with waves of dread and despair with the weight of what a progressive disease diagnosis means.
I've tried to take each medication change and treatment with hope and positivity. And was proud of myself for a while on my ability to cope. But sometimes, it’s hard, and I struggle to see myself in the mirror.
Unable to do the things I love
I stopped working out back in late 2021 due to pain. Naturally, I gained weight. I’m the heaviest I’ve ever been. I tell myself it’s ok and all bodies are beautiful, but I still don’t recognize the person in photos. I really miss moving my body, from playing tennis to lifting to walking more than 30 minutes without pain.
As my AS progresses, I find myself losing other hobbies. I have been unable to paint as much as I used to. Holding onto and using paint brushes is difficult, and bending or sitting for long periods of time causes stiffness. Likewise, I love my job, but the fatigue and brain fog make it difficult to be my best. I started dreading social outings because I’m so tired.
It feels like a lot of the pieces that made me me, aren’t accessible. Some days I do better; I sing along to songs on my drive to work despite whatever symptoms are there. Some days are really hard; I won’t look in the mirror and debate going on disability.
Support on hard days
On hard days, I try to remember that my body is working really hard. There’s so much going on I can’t see and trust the process. My appearance is only part of who I am, and this might be temporary until the medication works. I lean on my husband for support and love.
I call up a friend or spend time with my cats. I practice gratitude while also making room for the sadness, which helps me get through the rough patches when my resilience is lacking.
Ive learned that having an assortment of coping skills and support is essential with chronic disease. We’re all humans, and even warriors need rest. And that’s how I keep me me.
Have you ever had to take a leave of absence from work due to your symptoms?
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