I sat on the edge of the examining table while the medical resident poked and prodded at my joints, looking for tender spots and sites of swelling. The air conditioning was blowing, and in spite of my burning hands, I felt chilled. The spongy cushion of the examining table stuck to the back of my legs as I was asked to straighten and extend my knees. I could feel the gummy material peel off my skin as I stood up for some range of motion exercises. After an extensive examination, the specialist joined us to review the resident’s findings – early Rheumatoid Arthritis. The conclusions were presented to me and I was given a prescription to start medication and given requisitions for lab work and x-rays. They both looked at me and asked if I had any questions. Question marks flashed behind my eyes like a blinking pedestrian sign, but no words came to accompany them. I mumbled some unintelligible words that seemed to indicate “no” and strode out the door to begin my journey with arthritis.
Being diagnosed with a new disease can be overwhelming. Not only has our life been altered from our symptoms, but suddenly we are swamped with information about treatments, medications and all the mystifying properties of our diagnosis. In the heat of the moment, we often don’t know what questions to ask to help steer us in the right direction for managing and understanding our affliction. Support systems can take time to find, and even with all the best intentions from loved ones, they truly can’t understand the challenges we face unless they’re walking in our shoes.
Last August I had the extreme pleasure of being flown out to an arthritis bloggers event in Toronto, Canada called ARTHfully Living. This wonderful gathering was created by the gracious folks at GCI Group and Janssen Inc. They brought together a collection of people representing all different types of arthritis and related health issues. In this inspiring workshop I like to call Swollen Joints, Flares and Inspiration. , we met our peers, our caretakers, friends and colleagues. We shared the toils and victories of our struggle with disease. We discussed numerous issues, from doctors’ appointments, medications, lifestyle modifications, and the ever-changing vortex of our symptoms. We talked about the things that were important to us as patients, and communicated obstacles we’ve encountered in the medical system, our jobs, and sometimes, our families. One of the many things that evolved from this lively dialogue were questions we wished we’d asked at the very beginning of our diagnosis.
Based on interviews and suggestions from the roster of RA bloggers, here is a summary of the list of questions developed with support by Janssen Inc as a guide for newly diagnosed patients:
- What caused my rheumatoid arthritis?
- How might my rheumatoid arthritis progress and what is my prognosis?
- How advanced is my rheumatoid arthritis?
- If I’m diagnosed with one autoimmune disease does it put me at risk to develop other diseases?
- Are there any lifestyle changes you can recommend to help manage my rheumatoid arthritis? Can I continue to stay active while on medication?
- Do you have any suggestions on how to share the news with my family, friends and coworkers to help them understand?
- How bad does a flare need to get before making an appointment to see you again?
- What are my treatment options? How quickly will they start to work?
- What are the potential side effects of my medications and how will they be monitored?
- Where can I find more information and resources and support? Are there any programs available to help me manage my rheumatoid arthritis?
These are but a few of the thoughts that surfaced as we looked back at our first days with RA. There will always be more questions along the road, but perhaps these suggestions will help pave the way to getting back on the road to wellness. My biggest question will always be “how did I get this?” I may never find the answer to that particular question, but I’m confident I will find signs that will guide me onto the right course throughout my journey. We all forge our own path through disease. The route one person takes may not be right for another, but there’s comfort in knowing that no matter which path you take, there’s sure to be some company along the way.