How Rheumatoid Arthritis Impacts Lives

What kind of an impact does Rheumatoid Arthritis have on a life?

It seems impossible to explain all the impact that Rheumatoid Arthritis has. On a good day like today, I can hardly believe what I have been through myself - although I have lived it. This video bears out my memories. It has been real. And it also proves I am not alone.



Hearing the men always makes me sad. I was especially moved when the first guy said he “always has to depend on someone now.” Ouch.

Of course, the person that I identify with the most is the mum with young children. Let’s paint what she said on a billboard! “There is nothing normal in our lives anymore.”

Many tell me of family members or friends who just cannot get their minds around the ways that Rheumatoid Arthritis changes our lives. Listen to what else the lady said, “I would like them to really think that there are some people in this life that can’t even lift the duvet over themselves when they are really ill. And it’s difficult to understand that lack of strength.”

Indeed. It is difficult to imagine. And yet I remember when I could not pull up the duvet. Sometimes, I cannot take hold of anything, even a thin bed sheet. Like the girl in the video, I remember not being able to eat because of my jaw. More recently, my jaw would open, but I could not hold utensils and had to eat with my hands.

Today, someone told me the story of a lady rheumatologist. She considered herself to be extremely compassionate and gentle, suggesting exercise would help her patients. She saw herself as empathetic and kind. She thought that she understood Rheumatoid Arthritis as well or better than her patients did. And then, one day...

She got RA. And apparently, it was the severe Rheumatoid Arthritis that does not remit with treatment. She was embarrassed at her prior advice. She realized that she had been insensitive to her patients by not realizing the impact of RA on their lives.

She now realized that she had previously been insensitive. She concluded that no one can comprehend Rheumatoid Arthritis unless they have it. Sometimes, it really does seem like contracting RA is the only way.

But we can still try. I certainly tried all day again today. Several remarkable conversations left me hopeful.

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

Why is it so hard to get a Rheumatoid Arthritis diagnosis? RA-ers ask me that all the time. Why don’t we watch the mini-movie and then we’ll talk?

Video on referrals for Rheumatoid Arthritis:




There are some familiar themes there:

Minimizing:

Rheumatoid Arthritis patients report that healthcare professionals often underrate their symptoms. Sometimes, it is as if doctors are hard of hearing. But, other times it can be worse: they can intentionally discount the patient’s descriptions of the disease. Did you hear the lady say that her doc thought her just a “neurotic teenager”? I know one RA-er who was sent to a psychiatrist instead of a rheumatologist. I have actually seen doctors scoff about RA.

Ignorance:

Astonishing as it is, even many physicians are unable to recognize Rheumatoid Arthritis when confronted with the symptoms. They may not know that many RA-ers are seronegative, like another woman in the video. They frequently have misconceptions of Rheumatoid Arthritis. Otherwise, they may rely too heavily upon the ACR’s 7 guidelines.

Under-diagnosis:

Concerning Rheumatoid Arthritis, misdiagnosis is consistently “under-diagnosis.” Doctors tend to look with skepticism upon portrayals of RA which sound dramatic or extreme. (Who could believe someone could live with this much RA?) This tendency can cause doctors to “miss” Rheumatoid Arthritis entirely, seeing instead less serious conditions.

Consequences:

Some patients in the video stated that they were made to feel that they or their illness was unimportant. While that infuriates me, I actually have more grave reasons to protest. This is about more than hurt feelings. Here are some other consequences:

1) When doctors do not accurately hear what Rheumatoid Arthritis patients recount, it results in delay of an accurate diagnosis of RA. Of course this means either lack of treatment or an inappropriate treatment. Remember the dear mum in the video who was forced into an exercise program to treat her RA? If she had had another condition, instead of RA, she might have improved. However, it made her worse BECAUSE SHE HAD FULL-BLOWN RHEUMATOID ARTHRITIS.

2) If symptoms are not accurately heard, they cannot be accurately recorded. This may hurt the patient’s position with future providers, with long term disease management, and with insurance issues regarding treatment options.

3) Rheumatoid Arthritis is believed to cause permanent damage even during the first months of being symptomatic. Patients are permanently harmed when doctors refuse to hear them and do not refer to specialists or begin treatment.

4) Finally, I believe that one reason scientists can’t find a cure to Rheumatoid Arthritis is that the disease process is not entirely understood. It is impossible to cure what we do not understand. Failing to listen only exacerbates this problem.

Bewildering, huh?

Dangerous thought: what if doctors were hired based on whether they could find the right diagnosis… like plumbers and electricians? Would that help?

Recommended reading: Diagnosing Rheumatoid Arthritis
RA Warrior’s RA
It’s Okay to Laugh if You Have Rheumatoid Arthritis