How Life Has Changed Since My Psoriatic Arthritis Diagnosis

by Casey Nilsson Patient Advocate

Every morning I wake up, I hope for willpower.

Willpower to keep me from eating the spicy, sugary foods that make my joints ache and my skin itch. Willpower to redirect me towards healthy, fibrous, inflammation-fighting fruits and vegetables. Willpower to ignore the painful swelling on the ball of my right foot and go for a walk. Willpower to do anything but crash on the couch when I get home at night.

And every night, I celebrate my accomplishments and forgive myself for falling short — sometimes in big ways, and sometimes in small.

I never thought I’d need a chronic disease to teach me about self-acceptance. I’d spent the previous thirty years beating myself up for every transgression or step off a self-prescribed path; psoriatic arthritis changed my life forever, and in a wholly unexpected way.

I got my diagnosis immediately after giving birth to my daughter. (Ladies, not all pregnancy swelling is created equal.) My daughter and my disease came hand-in-hand; it’s difficult to manage one without the other. An example: Opening up tight, tiny socks and shoes for happy, wiggly feet is by far one of the hardest tasks to complete with arthritis in your hands. Adjusting a sticky highchair tray is a close second. The good comes with the bad.

Early on in my diagnosis, while I was still on maternity leave, my joint stiffness was present but not yet painful. Thanks to my very low-key baby, I had plenty of time to read up on the disease and learn how to manage it myself. I had time for dermatologist, rheumatologist, hematologist and PCP appointments. I learned how to take care. I learned how to ask for help.

Because once things got more complicated, self-preservation still lingered in the back of my mind. I returned to work, and I wasn’t sleeping well thanks to nighttime feedings. I wasn’t eating as well; the office kitchen is rife with temptation. I felt like I had no time to exercise. I was stressed. But nothing stays the same. Like parenthood, living with a chronic disease requires constant adjustments.

My daughter puts her own shoes on now – socks are still a struggle; we love summer! – but, since then, my arthritis has worsened. I didn’t have time to exercise or sleep well before, but both don’t come easy now with ever-present aches in my joints. I adjust. I move slower and I am more thoughtful with my time. I forgive myself again and again.

And, another unforeseen bonus: The people who love me recognize when I need help. I no longer need to ask for it. Just yesterday, after days and days of humidity culminated in swollen, deep-joint soreness like I’ve never experienced before, I came home and laid down while my husband cooked an omega 3-rich dinner and dressed our daughter for bed. (He’s been good to me.) I conserved my energy, read a story to my daughter, put her to bed and curled up on the couch for a movie.

It’s not every day I can manage to take care, but the self-preservation kick is always with me. I know if I do something kind for myself each day — go to bed a little earlier; fit in a walk; eat something green with each meal — I’m on the right track. And if I don’t, well, there’s always tomorrow.

Casey Nilsson
Meet Our Writer
Casey Nilsson

Casey Nilsson, an award-winning journalist and magazine editor based in Rhode Island, writes about autoimmune disease for HealthCentral. Casey is a 2018 Association of Health Care Journalists fellow, and her reporting on unfair labor conditions for people with disabilities was a finalist for the City and Regional Magazine Association Awards. Diagnosed with psoriatic arthritis in 2016, Casey enjoys digging into rheumatologic news, research and trends.