Feeling Good But Not Good Enough 

Last updated: September 2022

It’s been an encouraging few months, health-wise. The medication I started a couple of years ago is working better than ever. For the first time in over a decade, I can see my kneecaps on a daily basis. I actually like to squat a bit; it feels good to be able to do that without agonizing pain. I can get up in the morning and walk my dog without limping too much.

That hopeful, feel-good feeling

You can probably relate to this feel-good feeling when rheumatoid arthritis is actually controlled, and your life begins to resemble something normal. It feels so hopeful, and you try not to think about the other shoe dropping just yet because this time could be different. Maybe this period of good health will stretch out even longer than you think.

But there is another side to this feel-good feeling. For me, and maybe for you, along with much less swelling, comes two things: expectations and hard realities. I start expecting more from my body- can I walk another mile? Can I walk up a hill instead of just flat ground? Maybe I could go back to work again. Maybe I should stretch myself and take that long drive to visit my relatives.

Pushing the limits

Then I do one or more of those things, and the reality starts settling in. I go the extra mile and re-remember that whether or not I can see my kneecaps and bend my knees a little, I take a considerable amount of pain with me everywhere I go. My joint limitations create hard limits on how far I can push myself, and fatigue is still a huge part of my everyday life, so taking long drives and visiting relatives still comes at a high physical cost.

I wonder how much I should share because the last thing I need is for other people’s expectations to start pulling at me. If I “look good” to others, sometimes they will expect more from me, and the complexity of my reality isn’t something everyone needs to know. Anytime you let people in, there is a possibility that their opinions will sway how you feel about things. Over the years, I’ve given other people way too much power over decisions that should be mine to make. I did go back to work when this happened about 15 years ago, and 2 years later, I was much more disabled than I had been before going back.

The ups and downs of RA

Over the more than half a century of dealing with this disease, I’ve been through so, so many phases—years of severe illness and times of reprieve. Acute issues are sometimes resolved, and new normals after chronic ones reach a certain point. I have been here before, and I do a similar dance every time I reach some disease stability.

I feel good, my emotions start to soar, I push myself, and then I start to manage expectations. Wanting to live optimistically, believing that things can improve even more, and trying not to do too much. Worrying that if I do, I could go back into a flare-up and hoping I wouldn’t blame myself. I wonder how others handle this.

Never-ending cycle of decisions

If you relate to my story, what do you tell yourself during good times to manage your expectations? How do you increase activity, or do you do that at all? Do you worry about the next flare, or can you live in the moment with it all?

Rheumatoid arthritis is a never-ending cycle of decisions, and I hope the decisions I’m making move me more toward the direction of comfort as much as possible.

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