I was first diagnosed with rheumatoid arthritis (RA) in my 20s. At the time, I was preparing for final exams halfway into my master’s/law dual degree program. I first attributed my symptoms to working hard at school. However, once they became too difficult to ignore, I visited a rheumatologist who quickly diagnosed me with RA due to the way my symptoms presented.
Initially, I did not understand the scope of my diagnosis – I thought I would go to my appointment, be prescribed a medication, and get back to living my life. It took a while for it to sink in that I was going to need to adjust my life in order to best cope with my RA. Ultimately, I ended up taking a semester off from school to work with my rheumatologist and find a disease management approach that worked for me.
I am incredibly lucky that I have had a wonderful rheumatologist to work with throughout my RA journey. During this process, I learned how to best advocate for myself and work with my doctor to find and adjust my treatment plan based on my life goals.
There Are Two Experts in the Room
When I was first diagnosed, I had the mindset that I would go to the rheumatologist, they would tell me how to treat my RA, and I would follow that plan. My initial treatment ended up not working for me and, as I began to see how much my RA was impacting my life, I learned to become more of a partner in the decision-making process. I realized there were two experts in the room: the first being the doctor, and the second being me. My rheumatologist only knows what he sees and what I tell him, but I know what is going on in my body and whether a treatment is working. We need to work together to find a way to best manage my RA.
The more I was a partner in my treatment with my doctor, the more I wanted to educate myself. Social media groups were on the rise during this time, which gave me the opportunity to speak with others who were having similar experiences as me. I also did my own research online with credible sources so, when I met with my rheumatologist, I had questions prepared and multiple sources to help inform our discussions about my disease management.
“I learned how to best advocate for myself and work with my doctor to find and adjust my treatment plan based on my life goals.”
I know many people living with RA, myself included, can have trouble expressing an accurate level of joint pain on a scale of 1 to 10 when asked by their doctor. For me, I find it especially difficult to communicate joint pain related to a chronic inflammatory condition because you learn how to live with it over time.
I prefer to use descriptive language with my rheumatologist about what I am able or not able to do, like telling him it hurts to lift a cup of coffee, I’m struggling to open the door, or my knees hurt after a walk around the block. Sometimes, we also discuss remedies that he has previously recommended to help reduce my joint pain, such as icing my joints or going to physical therapy. If I am required to put a number against my joint pain, I tend to rate how much it is impacting my life vs. the level of joint pain itself. I found that expressing my joint pain through real-world experiences is easier to understand.
One other lesson I learned is that when you are uncomfortable or are having a flare, you should not wait to talk to your rheumatologist. Sometimes we think we need to just make it to our next appointment, but if I’m not feeling well, I find it helpful to work with my doctor’s office to be seen as soon as possible, whether that is being put on a cancellation list or speaking to my rheumatologist on the phone. Now that I have an established relationship with my rheumatologist, most of our communication occurs over email, which I find to be very helpful and convenient.
Taking Broader Life Goals into Consideration
I ensure my rheumatologist takes into consideration my life goals when adjusting my disease management plan. If I have concerns with how my disease management plan could impact my goals, I speak up and we talk through my concerns to come up with a solution.
Being an advocate for yourself with your healthcare team doesn’t always happen right away. It takes time to build trust, get to know each other and understand the best ways to work together to manage your RA. Learning to become my own best advocate has helped me conquer my deepest fears and find real meaning in helping my fellow RA patients. Life is full of challenges, but I think where there’s a will, there’s a way.
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