Very often with Rheumatoid Arthritis, we emphasize our differences. It helps the newly diagnosed to get over the shock of living with a new symptom every day. It helps explain a fickle disease that is quite unreasonable and undemocratic in its attacks. But what about our similarities?
Common threads and similarities in Rheumatoid Arthritis
As Bob West, our geneticist friend has hinted, there may be some different strains of RA. And we know that we are all different genetically, which affects how our bodies respond to treatments. But even with the diagnosis limitations that we have today, we who live with the disease find common threads.
What is today called Rheumatoid Arthritis is recognizable to us. In a public place, we notice RA in total strangers who don’t look sick because we recognize tell-tale signs. We meet a new friend who has RA and it is like we have found a long lost sister and talk for hours. (I’m so thankful for my #rheum mates it’s hard to put into words…)
I’d like to point out that there are many aspects of this Rheumatoid disease that we who interact in community understand to be common to the disease which are not reflected in academic literature. For example, we hear many had first symptoms in their feet, but hands are always stated to be the main point. Hand joints are given preference in diagnosis. Mystifying. That’s one of the reasons I built this site. And it’s the reason I’ve been so adamant that the patients’ voices must be heard.
Things that are said in our community fit nicely with the little that has been written about RA that comes directly from actual patients. We never read those books before RA diagnosis, yet the similar experiences are uncanny.
Two examples of common RA experiences in literature:
- From Out of Joint by Mary Felstiner: “In one decade I’ve lost my guarantee of good health, lost fluidity, lost ease in the physical acts of parenting, lost a fair practice of equal tasks, lost nouns like energy and swiftness, lost my lifelong singing voice and even a speaking voice free of crackles and pops, lost my elbow grease for vacuuming and yard work and tearing full speed down a swimming lane, lost any assurance I could run from threats, lost my trust in feminist to name my woes, lost my reliance on medicine and also in alternatives, lost my remission, lost my pregnancy. Amid all the losses what can never be found again is my old sense that each loss must be a fluke,” page 37.
- From a PhD nursing thesis by Dianne Roy, The Everyday Always-Thereness of Living with Rheumatoid Arthritis: “They are accepting the thrownness of their situations and living with the balance of what is possible today and what is not possible. The strength in dread is in accentuating the positive possibilities of now, of appreciating what can be done and not dwelling in those things that cannot be done,” page 174.
I’ve seen it happen a thousand times on this blog. Or someone sends me a letter asking how I know their life so well. The answer is that I’ve lived it.
Have you ever had one of those experiences? What are the things that make us similar? I’ll start the list and you can finish it.
- Making continual adjustments to deal with disability or pain.
- Hiding the severity of pain that would make others faint.
- Having family members or neighbors or employers who don’t think we’re very sick because our disease was misnamed.
- Having a heroic optimism that might make Pollyanna look cranky.
- Being told by a doctor that our disease pattern is not typical or that we look ok.
- Swelling without pain or vice versa.
- Having to take medication that scares us.
- RA Reality Versus “The Lie”
- Fighting Rheumatoid Arthritis Depression
- How Rheumatoid Arthritis Pain Affects Women’s Lives