Complications to understanding Rheumatoid Arthritis
Rheumatoid Arthritis is a complicated disease. I am not speaking of symptoms, medications, and lifestyle changes. I mean mechanically speaking – on a molecular level. It is complex and multi-level in its schemes.
That is one reason that experiences vary so greatly between RA patients: Which joints are affected? How many joints? How quickly does it spread through the body? Which other body systems are affected? How much destruction is there in the joints? Are additional autoimmune diseases involved? How does the Rheumatoid Arthritis initially present (what I call the “onset story”)?
What is typical Rheumatoid Arthritis?
Last year, my rheumatologist began to say that my Rheumatoid Arthritis was beginning to look atypical. I did not understand that since the only RA that I knew was my own. Around that time, I began to dig in to investigate what is the typical Rheumatoid Arthritis experience.
I wanted to do the research for myself. WHAT is typical? I read everything I could find.
I have read several books and what is called “typical” differs from author to author. But, I also began to scrutinize narratives of RA’ers all over the internet. And I also have connected with many one on one. What I have seen and heard from hundreds of RA’ers has not fit nicely into the neat categories or descriptions of any author.
Questions need answers
Every little thing that I learn raises more questions. If you have been reading this blog, you have heard me raise some of them. Can Rheumatoid Arthritis be understood or cured without answering any of them? I do not believe so.
To read a few of the questions that I have already raised, see The Four Courses of Rheumatoid Arthritis, part 1 , Is This the Best Time to Have Rheumatoid Arthritis, part 3 , and What Makes Diagnosing Rheumatoid Arthritis So Difficult?
The only thing that I am certain of is this:
If there is any discrepancy between the experiences of people with Rheumatoid Arthritis and those who academically describe and define this disease, it is the descriptions that are wrong – not the RA’ers.
It is not that they got their symptoms in the wrong order. Shame on them for not doing their RA right.
It is not that they have fallen short by missing a symptom on the list. How could they be so negligent?
It is NOT that the patients have failed the blood tests. The blood tests have failed the patients. The tests have failed to sufficiently demonstrate the presence of the disease. That is not the patients’ fault.
Why is it so typical to have atypical Rheumatoid Arthritis?
This week, I have driven across three states hoping to find one small part of the answer.