Being diagnosed with a rare autoimmune disorder comes with many challenges- one of the most common and often more difficult is learning to become your own advocate. More often than not, the people and healthcare professionals I encounter are not familiar with my condition, which frequently means they do not know the symptoms that accompany the diagnosis and the treatment options that work best for me. This is when speaking up for myself becomes vital.
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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.
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Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.
Here are some ways the MSAA can help you remain an advocate in your healthcare:
What are some ways you advocate for your care?