I wasn’t feeling well this weekend so I skipped yesterday’s #HAWMC question but I’m back now. It’s Day 13 of the WEGO Health Activist Writer’s Month Challenge. And this is today’s question:
Perfect Comeback: Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know they were out of line? #HAWMC
It’s a widely known fact that people with mental illness face stigma at school, at work, and even at home. What gets less attention is the difficulty people with mental illness encounter in getting diagnosed with and treated for more visible illnesses. Mental health “stigma” (or as I call it, “discrimination”) is often a roadblock to adequate treatment. As someone who lives with bipolar II (diagnosed at 18-yrs old), polycystic ovarian syndrome (19), Myasthenia Gravis (24), and asthma (24), I know stigma. There was a doctor’s appointment when I was being treated for myasthenia at prestigious clinic (let’s call it “Mustard Clinic”) that was my most humiliating moment. Ever.
The Discrimination of Invisible Illnesses Including Mental Illness
Mental illnesses are a type of invisible illness. When people with diagnosed mental illnesses see their doctors to get treated for physical pain (even with tangible symptoms), they are often not taken seriously. I’ve heard countless stories of discrimination from people with cancer, multiple sclerosis, lupus, Sjogren’s, and fibromyalgia.
I remember an experience I had in 2008 just weeks after Myasthenia Gravis (my autoimmune disease) had almost killed me. After undergoing treatment (plasmapheresis), I went to a prestigious clinic to be treated for MG. I stayed there for two weeks. The first day the neurologist assigned to me treated me well. He listened to me as I talked about the excruciating pain. When I told him about the pain in my hands and feet, he said he would “get to the bottom of it.” I was relieved. (Cramping and fasciculation in the hands and feet is common to patients who are on a combination of Prednisone and high doses of Pyridostigmine.) But the next visit, after another doctor stressed the fact that I have bipolar disorder, my neurologist treated me differently. I told him that I needed a solution for my pain—it was too much to bear. For months, I screamed through the night unable to sleep. He told me dismissively, “You’re just depressed.” I said I was not depressed because, well, I wasn’t depressed. (I was 24, and had been managing my bipolar disorder well for years.) Then I told him that I’d been reading this book at the clinic’s library about cramping caused by the meds and he snapped at me!
He actually closed the book shut and yelled, “You’re just depressed!”
Finally, I said firmly, “I’m not depressed. Just because I have bipolar disorder, does not make me a liar.”
I’ll never know how I had enough composure to say that without crying. It was the most humiliating experience of my life. I had experienced discrimination (specifically racism) before–my first racist experience at the age of 5-years old at the hands of my kindergarten teacher. My appointment was degrading, much like my first racist encounter. I hate being perceived as dishonest or incompetent because of the color of my skin or because I have bipolar disorder.
Everyone Deserves Dignity
Today, I have great neurologists who do listen to me. Sometimes, people ask me if I’ve considered staying changing my doctors’ perceptions of mental illness instead of finding new doctors. In my experience working in mental health nonprofit, people do not change long held bigoted beliefs overnight. I tell people that my number one job as a patient is staying alive–not enlightening ignorant people. I also make this analogy: If you have a doctor who is racist of sexist, would you stay? Would you wait for that person to evolve? Why should I settle for less because I have a mental illness?
Tomorrow, I’ll continue the month-long challenge and answer another #HAWMC question from WEGO.
–Your Stylist, Jessica Gimeno