I was truly stunned when I came across your speech. Your story produces intense reaction from a woman living with Rheumatoid Arthritis. RA is primarily an invisible illness. It can cause a person to be severely disabled quite suddenly and need help from medical professionals desperately. Here are a couple of my responses to your talk.
The mother analogy about hospitals made me smile. I have been sharing my own “Golden Rule for Doctors” for a long time: Treat your patient as you would want your mother to be treated. I think it is effective because doctors can seem to have a hard time imagining themselves as patients.
I once said that I could write a book of stories about improper ways the people respond to those who live with RA. Family members, co-workers, and church members, hopefully without realizing it, can bring a lot of pain to those already suffering physically. They may squeeze tender hands, require too difficult tasks, or make insensitive comments. However, doctors are the worst because that is where the RA patients turn for answers and help.
My complaint is not that patients are denied sympathy, although they often are. It is that they sometimes cannot receive physical assistance and accommodations they require – or often even diagnosis and treatment – due to the very nature of Rheumatoid Arthritis. Early in the disease process, there can be little or no visible evidence of RA. Diagnosis can depend upon the doctor’s willingness and ability to listen to a patient’s specific description and history. Blood test results tend to be normal for a considerable percentage of patients, especially in the early stages of Rheumatoid Arthritis.
Patients are literally at the mercy of their doctors. Many times, I have been told of doctors telling patients that the amount or type of pain and disability which they describe is not even possible and suggesting psychiatric care. This is especially devastating because early and aggressive medical treatment is the only hope to fight disability and death caused by Rheumatoid Arthritis.
If you hang around RA patients for even a little while, you will hear someone ask whether there isn’t some doctor somewhere who actually has severe Rheumatoid Arthritis herself so that there would be someone trustworthy to tell the story. They hope that after the truth is told, there could be changes that would change or save lives. Once, I even daydreamed of loaning one day of Rheumatoid Arthritis to the top doctor at the American College of Rheumatology since I thought that would “do the most good.”
Since I cannot do that, I decided to try to tell the story myself by writing this RA blog with its three humble goals, described on my Welcome page. I hope doctors will take advantage of learning about Rheumatoid Arthritis without having to pay the price that I paid for this knowledge. I hope others in the health care profession will realize from your talk and from my blog that we are all people who might need proper treatment ourselves someday.
PostBlog: The video is 26 minutes long. I don’t know how many of you will have time to watch the whole thing now, but maybe play it and listen while you do something else. I found the last few minutes valuable.
- What Is the First symptom of Rheumatoid Arthritis?
- Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
- American College of Rheumatology Redefines Rheumatoid Arthritis