No, I’m not an MD, BUT…
It’s Women’s History Month. Why? Well, historically, women are used to being forgotten, dismissed. Rosalind Franklin, Margaret Keane, Sybil Ludington, Octavia Butler, are just a few examples of amazing women you probably have never heard of, but the list is long.
When we speak about women and healthcare, stereotypically, men are doctors, and women are nurses. That stereotype continues today (ask any female doctor about patients who ask, “when is the doctor coming?”) Women’s concerns/symptoms get dismissed all the time. Women are treated differently as patients than men. Did you know the number one cause of women’s death is heart disease? Most people don’t know that heart attacks present differently in women than in men. Even some MDs miss the symptoms, and women die from heart attacks more often than men.
So, dismissing women, and particularly patient/caregiver voices who happen to come from women isn’t new to me. Dismissing them because they don’t have a degree is easy to do. But having a degree alone doesn’t give someone the only voice, nor does it make one right.
Today I dismissed someone because they had neither lived experience with type 1 diabetes nor had an MD. I want to clarify: an MD is important, but it isn’t everything. In fact, often, the most important voices come from patients. It’s why we talk a lot about why doctors and lawmakers must listen to patients. It’s equally important to listen to parents/caregivers who have valuable lived experience too.
In 2017, a resident did a neurological evaluation on my youngest son during rounds with other medical students present. My son had undergone a neurosurgery the day before for hydrocephalus. The resident missed the symptoms of a serious complication and I called them to his attention. He dismissed me.
I knew what he was thinking. I wasn’t a doctor. I was “just a mom.” What did I know? What he didn’t know was I had a BA from a liberal arts school and an MA from a research institution. I had been taught how to read and think critically. From the moment my son was diagnosed with hydrocephalus at the age of 6 months, I read everything I could get my hands on. I read myself into medical journals, and kept up on research, advances, and most certainly, complications. I knew which shunts had more malfunction rates, which ones didn’t need to reset after MRIs. I knew which type of hydrocephalus made a patient a candidate for an endoscopic third ventriculostomy (ETV), what the success rates of ETVs by age were, which doctors were doing them and where.
When my son was diagnosed with type 1 diabetes at the age of 2 ½, my approach to his diagnosis was the same. By the time he reached 5th grade, I had joined the #Nightscout, #OpenAPS and #Loop communities, and built him a “Do-It-Yourself Artificial Pancreas System” (#DIYAPS). I didn’t do this in secret. His endocrinologist was in the loop and was astounded. His DIYAPS managed his diabetes better than anything on the market and the data spoke volumes. Nurses in our public schools were amazed and grateful.
When we knew he needed another neurosurgery, we were required to meet with an endocrinologist at Boston Children’s Hospital. Once again, the data amazed the doctors. We had the diabetes part in hand, so Boston Children’s could focus on the surgery.
We were at Boston Children’s Hospital because I had read about the BEST neurosurgeon in the world for my son’s specific type of hydrocephalus, years before we needed him. And when we needed him —and I made sure we got him — we discussed complications should they arise.
So no, I don’t have an MD behind my name, but I could perform a neurological assessment like one; and I would have bet every dime I had, my car, and my home that my son was facing a serious complication and needed an MRI immediately. But I also had been around doctors and neurosurgeons for 11 years and I knew when I was being dismissed. The resident said we should wait until the neurosurgeon came in a few hours. I waited until the resident left with the medical students. Then I called the nurse.
I showed her the symptoms of the complication, known as sunsetting eyes, explained that his brain was swelling, and that if he didn’t get an MRI, he faced more serious complications and death. All the while, my son was screaming in pain. I insisted that she call the neurosurgical PA, who took one look at him and instantly ordered the MRI.
When we returned from the MRI, the neurosurgeon was waiting. He said my son needed immediate surgery. He never left my son’s side but to change his clothes. Even as we waited for the OR, he stayed with us in the pre-OP, and almost started the surgery there as the OR wasn’t ready — it was that dire.
My son lived because despite my not having an MD, I advocated for him. Because I took the time to learn. That knowledge didn’t happen overnight — it was years of reading, doctor’s appointments, surgeries, nurses, and fighting insurance companies.
I have an MA and I’ve taught all levels, from Pre-K through graduate-level students. I speak three languages. I was briefly a policy manager for the US division for an international organization, working on healthcare advocacy at the state and federal levels. But sometimes life circumstances require our full attention.
I chose to be a caregiver over having a career. I know my son is alive and thriving because I did. Yet the condescension and quiet dismissal I receive because I don’t have an MD (or during the pandemic because I don’t have a PhD, or ScD, etc.), or a paying “job” can be maddening.
I am eternally grateful to the experts on Twitter who post their research, or who share others’ research, so that I may learn. (And the ones who answer questions via DMs!)
Still, I AM a public health advocate. Advocating not just for my son, my family or for myself, but for everyone. Especially those who have not had the time that I’ve had to learn what I have, or to do what I do. I speak from my own experience, from what I’ve read, and from the knowledge of experts — people who DO have degrees, who’ve studied, done research, go to conferences, and teach. Learning from them doesn’t make me an expert via social media, but it does make me informed.
And for anyone keeping score… Yes, I ran unsuccessfully for Maine state senate, but what’s another “Hil(l)ary” losing to an uninspired, do-nothing man? Why else do we fall, if not so we can get up again? Others may stay down, but I choose to rise and shine.
I’ve helped pass four significant insulin bills here in Maine (one was an amendment to a previous bill I had worked on) and never set foot in office. This session alone, I’ve worked on three more. I crossed party lines to work closely on one of them because I place public health over politics.
So, don’t dismiss me because I don’t have the degree you think I should. Don’t dismiss me because I am a woman. Don’t dismiss me because I don’t have a “paying” job.
And maybe I won’t dismiss you because you fail to understand that there is some expertise that can never be acknowledged by a salary or letters behind a name.
(This was originally composed as a thread for Twitter. It’s been slightly edited for Medium.)
