What we need to tell our doctors and what they need to tell us.
I once dreaded public speaking. Surprising because in front of television cameras I am totally calm and focused on my subject matter. But put me in front of a room full of people all looking up at me standing behind a podium and my heart would beat, my stomach churn and my voice go one octave higher, not to mention faster.
That was before.
Before I was diagnosed with RA and before I knew kids got JA and before I had a mission. Now, my mission is to create awareness for this disease, especially for the kids, teens and young adults. Now I am as comfortable in front of hundreds of people in an auditorium as I am in front of millions on TV. My message, arthritis is not what you think it is. My focus? It’s not my heartbeats or my stomach churning, my focus is my mission.
To date my advocacy audiences have all been associated with having arthritis. Parents who want insight into their JA kids, young adults who are searching for their identity and arthritis organization executives that are looking to raise money for awareness and find a cure. The perfect audiences because we are all on the same page.
However, one very important page is missing. The doctors who treat RA and JA are not in the audience. The pediatricians and the rheumatologist who diagnose, write the prescriptions and monitor their patients are the missing.
The reason I feel that page is missing is because the doctors are educated to treat the disease and they do it well, but they are not the patients. They don’t personally experience the way we feel, or the emotional and personal changes in our lives unless we can express ourselves.
I am not implying that doctors don’t understand, I’m just saying they are into the medical aspects while their patients are into the confusing world of this miss-understood and multi-dimensional diseases.
So why do I want to speak to doctors? Because I am not just an advocate, I am a patient. A patient who has learned so much along this RA journey. Who has learned to understand the depth and width of RA that very few people, even doctors don’t talk about. I am a patient who has 23 years experience living with RA.
Could I get it all into a 20 minute speech? Only if I talked shorthand and fast, and luckily I have learned both from working on TV.
FIRST I would tell them to inform their patients that arthritis has no boundaries.
The average person goes into this disease concerned about the aches and pains related to their joints. They are not aware that RA can attach almost every part of the human body. We need our doctors to tell us this.
SECOND there is no such thing as total remission. Total remission would be a cure. To date, we have no cure. Patients need to know that because one aspect of arthritis is in remission, other aspects of the disease can attack in different ways.
When I finally went on a medication that put my joints in remission I thought my RA was gone. I innocently used the word “remission” as if I was cured. Through life threatening experiences I saw learned the reality.
When I thought I had bronchitis I went to a pulmonologist, eventually into the hospital. Both the doctor and I never thought to tell my rheumatologist. Why would we? It wasn’t my joints. I kept taking my RA meds until my rheumatologist found out I was in the hospital and immediately took me off of then, before I died from lung poisoning. Every type of doctor looked at me in the hospital except a rheumatologist because nobody there, including myself, thought that the lung issues could be related to the RA diagnosis printed in red letters on my hospital chart.
And then it happened again, some years later. More lung issues, more pulmonary doctors, multiple x-rays showing clear lungs. For thirty days I was treated for bronchitis, then for pneumonia, until finally, as I continued to decline, a Cat scan with contrast was ordered that revealed multiple blood clots in my lungs. I was a walking time bomb. If just one of those clots went to my heart or my head I would not be writing this today. I did not think to tell my rheumatologist, my pulmonary doctor didn’t think to tell my rheumatologist. What were we thinking?
The importance of doctors talking to your other doctors.
I was thinking like the RA patient I was and my doctors were thinking like the specialist they were. Only missing ingredient was none of us thought to speak to my rheumatologist. None of us put the pieces of the puzzle together because we forgot to include the most important piece.
THIRD that patients need to report anything that seems serious or refuses to respond to medical treatment to their rheumatologist short of a toothache, a broken bone or stubbed toe.
Rheumatologist need to advise patients when they are first diagnosed that many of the things that might happen to them could be associated with autoimmune disease. Patients need to report to their rheumatologist sooner rather than when it’s an emergency situation. Specialized doctors need to be aware of RA patients’ vulnerability to issues that seem outside the RA boundaries.
Doctors and Patients working together
And FOURTH, that patients need to talk in shorthand, be prepared, come with notes and questions and respect doctors time.
We, as patients must be considerate of our doctor’s time. There are always patients far sicker than we are and we must respect that. We can’t cry wolf and expect a doctor to respond. But we can report symptoms and updates of health issues by email or telephone messages to the rheumatologist office. We don’t have to speak directly to the doctor unless it’s an emergency, but we do have to let our rheumatologist know what’s going on in our medical lives that might, just might pertain to our disease
Bring your list, on paper, in your phone or your iPad, just bring it!
My personal experience tells me we can’t totally rely on other doctors outside the rheumatology field to do it for us. They too are busy and many don’t understand all the issues with our disease.
Bottom line, I would tell a room full of rheumatologist to explain in a few short sentences that rheumatoid or juvenile arthritis can and does affect almost every part of your body. Patients need to be aware, alert and report.
And why do I feel it’s so important to get this dialogue going between patient and rheumatologist? Because I wouldn’t be around writing this blog, speaking to groups, advocating to politicians if it wasn’t for the fact that I have learned this lesson the hard way with RA bringing me to emergency situations. Amazing how quickly you realize the ferocity of rheumatoid arthritis when you hear a hospital nurse say to you, “Do you have your will in place?”