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Advocating for Your Health

By Moyna John
February 6, 2022

“Any other medical conditions, Ms. John? No diabetes, high blood pressure, or high cholesterol? Are you sure?” As I lay in a hospital bed during my recent flare, the only thing medical staff can focus on is my size. Despite the fact I am struggling to breathe and experiencing a severe case of MS hug. Every new nurse doing my vitals asked the same questions. Always surprised when I reply, “No, only multiple sclerosis.” Sometimes I can see the questioning look in their eyes because they do not believe me. Of course, a plus-size Black woman has at least one of these other diseases, right? 

 

I know what you’re thinking. The nurses and doctors are doing their jobs and being thorough. The problem is the constant assumptions and accusatory bedside manner I receive. Or the usual losing weight will solve all of my MS issues spiel. I have experienced this treatment whenever I needed care outside of my MS specialist. My ailments come second to my appearance — this leads to me advocating for myself and my health. This is my body, and no one knows it better than I do. 

 

Tips for advocating for your health

  1. Conduct research. Before your doctor’s appointment, conduct research about your medical concerns. As I said earlier, no one knows our bodies better than we do. Read about risk factors, medications, and side effects. It is best to be well prepared and informed. 
  2. Monitor your symptoms. Often, doctor’s appointments can be overwhelming. Sometimes you forget everything you meant to mention. Especially if you are like me and one of your symptoms is brain fog. Keep track of what you are experiencing. Write it all down, so you have a list to present to the doctor. Also, write down how long the symptoms have been occurring. 
  3. Ask questions. Do not be afraid to ask questions when necessary. If something is unclear, speak up and ask for clarity. If you have questions before the appointment, make a list. I used to be very anxious about asking questions to doctors. I have learned to work through this fear. It is necessary to understand everything about your condition and treatment. 
  4. Speak up. I would become anxious when it came time to speak up for myself. I feared the doctors would be dismissive of my opinions or not react in a concerning matter. I have found it helpful to practice in the mirror what I plan to say. It has caused a big increase in my self-advocating confidence. Also, it is a boost to my overall mental health. It is hard to speak on your own behalf, nervous about not being heard. I am empowered now to ensure I receive the best care possible. My body matters and so do my opinions. I am in control of my health and wellness. I say this daily as a reminder.
  5. Bring someone with you.  Advocating is not easy. IF it’s hard to speak on your own behalf, bringing someone with you can help, possibly a close friend or family member. This person can also advocate on your behalf. Or be a second pair of ears, so no information is missed. I usually bring my mother or my husband to my appointments.

Being a Black woman with a chronic illness is already challenging; adding self-advocating can feel impossible. More reason advocating for your health is essential. Remain in tune with your body so you can thoroughly explain what you’re experiencing. Listen to everything being said and ask questions when unclear. Self-advocating is a vital tool to ensure we receive proper care. 

Moyna John

Moyna, diagnosed in December 2019, resides in NYC. She is focused on adding people of color representation within the MS community. When Moyna is not promoting advocacy, she is parenting her three-year-old son. You can follow her journey on Instagram and on her website.

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