Living with multiple sclerosis often means navigating a complex healthcare system, where self-advocacy becomes essential. Recently, I experienced firsthand how crucial it is to stand up for yourself in medical settings.
About 6 months ago, I made the decision to switch to a new neurologist, mostly due to the cost of my annual MRIs. I did my research and found an MS specialist 1.5 hours away and decided to give him a try. I arrived at the office, was pre-screened, and all seemed well until the doctor came in and I found myself being questioned and patronized in a way I have never experienced in a medical setting (or any setting really). Despite living with MS since 2016, doing well on the same DMT for 6 years, and working for MSAA for the past 3 years, the doctor asked me to justify my treatment and explain its benefits in detail before he was willing to continuing the conversation. I never received a physical examination, he never once asked about my lifestyle, and the entire interaction felt like a test. I guess I passed because he did end up ordering my next MRI and continuing with the same treatment path I was already on. The experience left me feeling unheard and disrespected.
I’m sharing this to shed light on the importance of self-advocacy. It’s not just about asserting your needs; it’s about ensuring your voice is fully incorporated in your healthcare. When a healthcare provider doesn’t listen to you or respect your experience, it can hinder your ability to get the care you need. Self-advocacy empowers you to push back, seek second opinions, and find clinicians who treat you as a partner in your care. I realize this is easier said than done. Finding a new provider, making changes to your treatment, navigating insurance, etc. takes so much energy and when you’re working with fatigue, this can feel nearly impossible. I want to stress that while difficult, it IS worth it.
Ultimately, I chose to return to my previous neurologist. Through self-advocacy, I realized that even though I needed to manage costs, my comfort and trust in my healthcare provider were incredibly important (I also learned that my MRI schedule could change because I asked the right questions). To me, self-advocacy isn’t just about pushing back against negative experiences but also about making informed decisions that align with your needs. The old adage is true- “Knowledge is power”.
For anyone navigating similar challenges, remember that your experiences and knowledge about MS, and more specifically your MS, are invaluable. Push yourself to seek out healthcare providers who listen, collaborate, and support you fully. It’s worth it and they are out there.
Sending extra energy and determination your way!
