Chronic Illness and Relaxation: What Does It Feel Like to Actually Relax?

Twice on podcasts this week I heard the guest tell the host how great they sleep. Out of an hour long podcast filled with interesting topics, those casual statements are what jumped out and stayed with me. 

I don’t understand what that means. The exact sentences were:

“I’m a great sleeper”.

“I sleep great.”

I honestly don’t know what that means. I don’t think I’ve ever slept great. What does it feel like physically? Emotionally? Mentally?

I hear people talk about struggling because they haven’t slept well for a night or two and I realize that I speak up when I have a rare day of not feeling exhausted. So hearing this great sleep casually mentioned got me thinking.

When I get into bed at night, it becomes a recital of movement. Every few seconds I have to adjust my position. There’s soreness and pain. I search for the position that provides relief and when I can’t find that I settle for one that at least isn’t causing more pain. 

I wake constantly and perform the whole recital again. I might sleep for 20 minutes just to take an hour and a half to fall back asleep. So, I get recommendations to at least try to relax and rest even if sleep doesn’t come. 

I don’t relax. Like ever. I remember a few years back a photo was taken of me sitting at an outdoor table. Nothing special about the location or anything, but when it was posted online it received tons of comments about how relaxed I looked. And I remember that moment well. It stands out because I actually felt relaxed in my body and in my mind. It’s such a rarity that it seems like everyone noticed. 

Think about that. I suspect there are other people dealing with chronic illness who will recognize some of this. Pain and discomfort are always there. Our minds race because we not only have to deal with the usual daily life stuff like work, family, household chores, bills; but we also have to keep track of medications, medical appointments, plan to the minute so we can get through the day, insurance issues. 

It’s a different kind of stress and/or anxiety. This isn’t a rough stage to get through. This is our life. Just when we find routines and medications that help, our bodies throw something else at us and we need to adjust again. 

I think about relaxation a lot. I know relaxation is important. I know I'm supposed to find ways to reduce stress and rest. But knowing that and being able to make my body and mind actually do it are two very different things. It’s incredibly important to our health. But my body and mind have lost the ability to achieve it. 

Maybe that's why those two completely ordinary comments stayed with me. They described something so casually that feels completely foreign to me. Not just sleeping well, but the idea that your body can simply settle down, your mind can quiet, and you can rest without having to work at it.

So, I wanted to share my thoughts and I want to ask others with chronic illness if they have figured out ways to truly relax. Not just sit down. Not just stop working. Not just lie in bed. Actually feel your body and mind relax. I’d really like to hear from you.

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities. Click to submit: https://www.radiantrheumatology.com/patient-perspective