This year I’ve been practicing saying no and pulling back. It’s a hard thing for me to do and it doesn’t come naturally. But I’ve had to set more limits on how I spend my time because my treatment hasn’t been working for a while and I’ve had a long, difficult period with my rheumatoid arthritis.
To be honest, I have observed some mixed reactions. Perhaps because I don’t necessarily look any different on an average day when I explain that I’ve been going through a rough patch with RA people don’t always understand. It’s not always visible— the pain, the stiffness, and the fatigue. Thankfully, plenty of people in my life have been supportive, caring, and interested in listening to my difficulties. It makes all the difference to have that understanding and patience surrounding me.
I thought I could push through the pain.
At first, I thought I could just “push through” because that is what I usually do. Grin and bear the pain. Keep the fatigue to myself. But I just couldn’t muster the physical strength to do all the things. So, I have had to do less and let things go. Others can take on the tasks—I don’t have to do it all by myself.
Previously, I might have every night after a full day of work booked with volunteer responsibilities, meeting various friends, or networking. Then I may have a couple of morning coffee appointments and a weekend obligation. But no more. I’m now home and resting most nights of the week and usually just do one weekend engagement (if that). While I still don’t feel well, I am less exhausted and stressed.
Perhaps I will eventually be able to ramp up and do more, but I can’t return to my previous breakneck speed. My priority is keeping my health as stable as possible until I can transition onto a treatment that will hopefully work better. But it will take time to even determine if the treatment is working, so I’m looking at a timeline of months.
I think I was burning myself out.
To be honest, while I enjoy a busy and fulfilling life, I think I was burning myself out. I was struggling with my RA since last fall, but didn’t want to admit how hard it actually was. And while I changed medications with the goal of improvement, it ended up not working the way I had hoped. Between obligations, work, family, and my health I was being stretched too thin and the stress was wearing me out.
Pulling back and saying “no” more often may have been the best thing for my health, yet it’s been one of the hardest things to do. I like helping. I like doing. But I need to be resting and caring for my health instead of whirling around like a spinning top. I’ve had to tell myself that others can step in or that I can only do so much. I’ve had to let go of things I cared deeply about and hope that things work out for the best. I can’t do it all—and the attempt was worsening my condition.
Don’t get me wrong. I still do plenty. My husband reminds me that I do a lot more than most people! (He is a little biased!) But he has a point in that I work full time, volunteer, and enjoy connecting with friends and family regularly.
I think it’s a good thing for us RA patients just to be reminded sometimes, that saying no can be a good thing. We need to take care of ourselves, as much as we want to keep chugging along like normal. It’s OK to say no a little to others, and yes a little to some self-care.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?