I was diagnosed with rheumatoid arthritis just before I turned 20. I’m soon going to hit the point where I’ve had an autoimmune disease longer than I haven’t.

In many ways, I’ve been lucky; I responded to the same treatment for twenty years, I have almost no joint damage, and I only fell for a holistic provider’s “detox” scam once. But after twenty years, I've learned that communication — between the healthcare professionals on my care team, and with me — is the most important thing for my care.

Below are just a few scenarios that I've managed, and how I now approach communication challenges with my team.

Breaks in communication

In my years with RA, I've lived through multiple communication challenges with my care team. The most recent example: It wasn’t until a friend with lupus told me she was getting a third COVID vaccine that I found out immunocompromised people needed boosters. My rheumatologist and general practitioner assumed the other one was monitoring my vaccine status and educating me through the pandemic. In reality, neither was.

Another scenario: Five years into my treatment with a different team, poor communication between my neurologist, primary care, and rheumatologist led to me being over-medicated and on five highly contraindicated medications simultaneously, all prescribed by doctors in the same practice.

Thankfully, a hawk-eyed pharmacist caught the over-prescription before it could do serious harm, but I had already felt the frightening side effects and had to deal with the fallout in my personal life.

To this day, I’m not afraid of a bad flare, I’m afraid of a breakdown in communication between my providers causing me harm.

Finally, in the winter of 2022, I was exhausted in a way I knew wasn’t low vitamin D or low iron or just a bad flare. I believed it was my thyroid. Both my primary care and my rheumatologist doubted it.

By the end of May, my hair had visibly thinned and I had gained 16 pounds in addition to the extreme exhaustion. At my six-month rheumatology appointment, I told my doctor about my new symptoms and that I was still exhausted. Lo and behold, it was my thyroid. I started Synthroid (levothyroxine) and am back to my normal level of exhaustion.

Advocating for myself

Because of these events, I try to use correct medical terminology and question medication interactions. Know that I’m not trying to be a know-it-all! I’m trying to mitigate the breakdown of communication by being as accurate and precise as possible.

I developed this skill from years of having to be my own advocate and make sure that rheumatology, primary care, neurology, dermatology, urgent care, ortho, gastro, and more were all on the same page about my treatment plans, symptoms, medications, and diagnostics.

It’s not a case of me spending too much time with “Dr. Google," or that I binge-watched "House" and "Grey’s Anatomy" right before my appointment. Rheumatoid arthritis and all its foibles have been my entire adult life.

I’m not challenging your experience; I’m trying to participate effectively in my care.

The takeaway

It's helpful when you listen when I tell you something is wrong. At the end of the day, I know you see many patients, especially those who are probably struggling more than me. I might be the healthiest sick person you’ll ever meet, but you’re my treatment team, and I picked you all because you provide quality treatment. So please communicate with each other, listen to me, and don’t get offended when I use medical terms. I’m just trying to make everything easy on all of us.