I recently learned that one of the top search questions people ask about rheumatoid arthritis is: “How does rheumatoid arthritis feel?” When most people ask this question, they are thinking about the physical sensation of joint pain, because the word arthritis means “joint inflammation” (which causes pain).
However, after living with rheumatoid arthritis for twenty-one years and leading self-management and support groups for five years, I have to say that the “extra articular” or non-joint effects of rheumatoid arthritis are often the most difficult to cope with.
With that in mind, I wanted to share my experience of what the different aspects of rheumatoid arthritis feel like beyond joint pain – it affects every area of my life, not just my joints!
You can skim through the gallery below or read the text a little further down the page.
Rheumatoid Arthritis feels like more than joint pain
Here are my immediate thoughts – I also recommend checking out Chronic Eileen’s post on CreakyJoints which describes her perspective on this question as well.
- Rheumatoid arthritis pain feels like there’s hot glue in my joints when I wake up
- Rheumatoid arthritis fatigue feels like saying “no” when I want to say “yes”
- Rheumatoid arthritis frustration feels like having a flare up even when I “did everything right”
- Rheumatoid arthritis overwhelm feels like being confused by all the possible management options…diet? exercise? sleep & rest? medication? which is right for me?
- Rheumatoid arthritis jealousy is the feeling that everyone else has it figured out and I don‘t
- Rheumatoid arthritis depression feels like grieving the old me and watching my friends move on while I’m stuck in the past, the life i was “supposed” to have
- Rheumatoid arthritis fatigue feels like someone turned up the volume up on gravity and my body resists movement
- Rheumatoid arthritis support feels like connecting with a chronic illness community who “gets it” and finally feeling validated
- Rheumatoid arthritis empowerment feels like embracing (rather than fighting) my new normal and seeing the possibilities for a vibrant, beautiful life with arthritis
How do you learn to thrive with all the ups and downs of life with rheumatoid arthritis?
If you’re curious to learn more about the last bullet point, I invite you to learn more about Rheum to THRIVE. It’s a comprehensive rheumatoid arthritis empowerment program I designed specifically to help people with autoimmune arthritis learn concrete, practical tools to live well with arthritis. You can take the self-paced course anytime, or join the virtual, cohort-based support groups which run twice a year. See all the details here!
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