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. Stigma is a roadblock to 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.
This brings me today’s WEGO prompt: Invisible Illness vs. Visible Illness : What are some stigmas you have experienced with your invisible OR visible illness that have made you feel invisible? How have you tackled them?
MY ANSWER: “Doctor, it’s not in my head!”
Mental illnesses are a type of invisible illness. When people with diagnosed mental illnesses (like anxiety, depression, bipolar disorder, or panic attacks) see their doctors to get treated for physical pain 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 who sought help upon exhibiting symptoms. In 2008 I experienced
stigma when I tried to get help for Myasthenia Gravis (MG), a neuromuscular autoimmune disease. By September, I had all but one of MG’s symptoms (difficulty breathing); relatives and friends who are doctors call me a “textbook case.” I saw my primary physician twice between August and September of 2008. Let’s call her “Dr. M-Ron.” At my August visit, I told her that I was tired all the time and that I had to manually pull up my eyelids because they kept drooping (ptosis).
Weeks later, when I was climbing up a long flight of stairs at work, I started falling. And falling. I couldn’t get up because I could not feel anything below my waist. I was coaching high school mock trial then. Many students stepped over my body and rushed to class before I successfully begged two students to help me up. I returned to Dr. M-Ron with this information and recalled the multiple times I fell down during yoga. I also told her about how I sometimes couldn’t feel my legs or arms at all. I told her about my problems speaking coherently (which she could see for herself) and trouble swallowing food (dysphasia). What did the doctor tell me? She said, “You’re stressed out.” I knew this woman had flipped. I told her, “With all due respect, I’m not stressed or depressed. If this was stress, then millions of Americans should be falling down the stairs at work and school because life is inherently stressful.” A simple blood test would have revealed I had MG but she did not order it. I didn’t take Dr. M-Ron’s words as gospel truth. In October, I saw a neurologist who immediately diagnosed me with MG after examining me. The neuro also ordered a blood test, which decisively confirmed MG.
On October 10th, just four days after I was diagnosed with MG, I was already in Myasthenic Crisis and hospitalized for two weeks. By that point, I was too weak to breathe, feed myself, and bathe myself—all consequences of the late diagnosis. When I obtained Dr. M-Ron’s notes from my visits, I learned that she wrote, “Patient has Multiple Sclerosis, Miesthenia Gravis, or stress?” (Yes, she did not know how to spell this illness!) Again, despite any suspicions, Dr. M-Ron never ordered the test. I reported her negligence to the insurance company. Sadly she was not the only doctor who gave me a hard time just because I have bipolar disorder. Basically, stigma almost killed me.
Today I have physicians that listen to me. Since 2009, I’ve had a fantastic neurologist who is a renowned expert on Myasthenia Gravis (and Sjogren’s). Here are some lessons I learned.
Tips for Dealing with Stigma:
- Persevere: Some people are just awful (I want to use another word here but my mother reads this blog). We can’t change everyone. Reasoning with doctors who had stigma (including one from a famous clinic) has never worked for me. If a doctor doesn’t respect you, find someone who does. (Yes, I know it’s easier said than done.) I have improved with MG because my neurologist of four years actually listens to patients. She graduated summa cum laude from a prestigious medical school but she has no “God Complex.”
- Be Discriminating in Sharing Mental Health History: I talk about my bipolar disorder when I see my therapist—seeing her is maintenance, which is part of why my bipolar disorder is under control. When I saw an ENT (Ears, Nose, Throat Specialist) this summer because of problems with my nose and ears, I didn’t discuss my bipolar disorder because it was irrelevant. By contrast, we talked a lot about MG, which was relevant. I got a swift diagnosis. Without it, I might be deaf now.
Have you ever faced stigma? Stay tuned for tomorrow as we continue WEGO’s November Health Blog Post Month. I will also do more blogging about mental illness.
Fashionably ill has recently been nominated for a WEGO: Best in Show Blog Award. I’ve also been nominated for Health Activist Hero. You can endorse me for both awards here on WEGO’s website (endorsing is like voting; no money required–click purple button twice).
–Your Stylist, Jessica Gimeno
Like Fashionably ill on Facebook
Meet other warriors! “Like” us on Facebook at https://www.facebook.com/fashionablyill.