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My RA Moment: Taking Control of My Care
Why isn’t my doctor listening to me? Does my doctor doubt the hell I have lived for more than a decade of my life? Is this what the rest of my life will be like – constant pain and immobility?
Those were the questions running through my head as my rheumatologist told me he was going to put me back on a medication my previous doctor and I had already tried, one which I clearly explained didn’t work for me. Despite voicing my concerns, he continued to speak over me and said, “That’s fine. We will put you back on it.” I was confused and devastated.
Looking back now, it was that experience with my rheumatologist that changed me as a patient. That was when I decided enough was enough. Rheumatoid arthritis had already stolen years of my life, and I wasn’t going to live like this anymore. I realized I needed to take control of my care and find a new doctor. It was my moment of empowerment.
When I met with the new rheumatologist, he asked me questions instead of dictating the course we would take. He asked me how I felt about medications and how RA was affecting my daily activities. He made me feel different than my previous rheumatologist – he put me at ease and made me feel like I was no longer alone in this battle. I finally felt like I had a voice when it came to managing my rheumatoid arthritis, and I knew I had found the right partner.
My new rheumatologist and I went to work to find a new treatment. We talked a lot about different options and what would be involved with each of them – whether it was injecting myself with a shot or having a healthcare provider give me an infusion. We discussed the treatment that would best fit my schedule, and once I was comfortable with our decision, I started an infusion therapy that I’m still on today.
I often think about what would have happened if I hadn’t made the decision to advocate for myself and ultimately find a new doctor. Would I have been introduced to my current treatment? Would I have been able to get back to doing the things I enjoy doing? I am thankful to have found a doctor who treats me with respect and really listens to me. I’m even more thankful to have found a treatment that works for me.
Although the journey to finding the right doctor and treatment for me wasn’t easy, it taught me to be proactive when it comes to my health. I’ve learned that it’s okay if the first doctor you visit isn’t “the one.” I’m not afraid to ask questions and voice my thoughts, especially when it comes to treatment decisions. And, if I was asked to consider a new medication, I’d be sure to ask my doctor plenty of questions to find out as much as possible before we made a decision.
Living with a chronic disease like rheumatoid arthritis is not easy, but discovering my voice as a patient and taking an active role in my care has made an impact. Remember, you too have a voice, and using it may change the course of your journey for the better.
To hear more from Mary and others about their journeys to find a treatment that worked for them and the importance of having a voice, visit FinelyTuned.com. For a list of treatment-related questions you may want to ask your doctor, click here.
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