Autoimmune Disease: Mistreated Women In Health Care
As I am sure you already know, it was International women's day on Friday. A day to celebrate the historic women who fought for our rights to vote, receive an education, have successful careers, own property, earn money and be recognized as valuable members of society. Not only am I thankful to be a woman but I also feel so incredibly lucky to be surrounded by many empowering women, in my family, friends and even on my social media. I scroll through my Instagram each day and see these powerful, intelligent and strong women, getting educated, raising children, supporting families, running businesses, and even fighting autoimmune disease, all while managing everyday life.
You are my hero’s.
Over 50 million people in the US are living with autoimmune disease and more than 75% of them are women. That means that 38 million women, in the US alone, will develop a condition that could potentially lead to weight gain, cognitive disorders, mental illness, elevated blood levels, increased risk of developing other debilitating conditions, altered hormones, and other overwhelming symptoms, leaving us exhausted, fatigued, and more.
How does this relate to international women’s day? Why am I talking about feminism and autoimmune statistics in one post? Well, it is not just about the numbers. It is not just about the number of people in a room who suffer from debilitating chronic disease. It is not just about the fact that women are significantly more susceptible to autoimmunity. The growing rate of autoimmune diseases in women has become an issue in feminism and let me tell you why.
These are just a few of the comments submitted to me from female autoimmune patients with a less than ideal experience in the medical system that I have talked to on thefedupthyroid. Some of them are comments that my doctor had told me when I shared with him how I was feeling about a year ago.
“You’re fine. You just need to eat less!”
“You are depressed. I will write you a prescription for an anti-depressant”
“You are a new mom, of course you are tired”
“Not everyone can have babies, there is no use in worrying about it”
“You’re fine. Stop complaining”
“Your google diagnosis is ridiculous”
“it is all in your head”
“why are you crying? You must be depressed”
“Your blood work shows that you are fine”
“I don’t know what you want me to do, you are fine”
"I am the doctor here, nothing is wrong with you"
"It is probably just your period"
“You are a know it all, aren’t you?”
I was told at 19 years old that I was suffering from depression, which had caused me to "create" an illness in my head (totally disregarded that I was already diagnosed with Hashimoto's and still suffering from all of the symptoms). When I asked to have my hormones tested as I was experiencing uncomfortable PMS and symptoms of high estrogen and testosterone levels, I was told that there was no use testing my hormones because “not every woman can have children.” I was told that my lab work looked fine and that I just wanted attention. I was called a “know it all” by the doctor who I was depending on to help me. I was told to not bother coming back because he had too many patients who needed real help anyways. I am so much stronger now than I was when I sat in his office, taking the prescription for a pill I knew I didn’t need and wiping my tears so that I could maintain some dignity as I walked out of his office for the final time. As strong as I have become since then, I have tears streaming down my face as I write this. I shouldn’t have had to go through that. Nobody should have to go through that.
- Women are often dismissed by the medical system. They are ignored, pushed aside and made to feel ridiculous when opening up to their doctors about their symptoms.
- Women are made to feel like their symptoms are in their head, made up, exaggerated or a result of the fact that they get their periods each month.
- The medical model usually only recognizes quantitative data, like blood work, and does not pay attention to symptoms and underlying causes. This means that women who know something is wrong in their body are often overlooked, ignored and silenced in the medical field.
-The medical system does not take the concerns of women seriously, and women are often stereotyped for being overly emotional and dramatic.
Conventional medicine was created on a sexist and misogynistic foundation. Whether you have or have not had a bad experience as a women in the medical world, the history of health care is a sexist one and that is just the truth. Women have been seen as less than men since the beginning of medicine. They are less stable, less important and less valuable in the health care system. They are fragile, emotional beings in the eyes of the medical model. Anecdotal evidence suggests that women who speak up and stand up for their beliefs are called “know it all’s” and are identified as difficult patients. Women do not receive the same level of care as men, they are often prescribed the wrong medication and under-treated or mistreated for their symptoms. Women often receive less health benefits in the developed world and have to wait several years to get an accurate diagnosis. Though these issues have improved since the beginning of medicine, they have not resolved. We need to put our ignorance aside and understand that systemic sexism in medicine is very real and very dangerous.
After about a year of "doctor shopping" I found a female doctor a short way from my home. Prior to my first appointment with her I had planned our entire meeting in my head. I had created arguments in my mind, defences, proof of symptoms etc. I had my walls up, ready to walk out of another office. This time I assured myself I was not going to let someone walk all over me. To my surprise, this doctor assured me that I would be taken care of, taken seriously and encouraged to discuss everything going on physically and mentally. I was stunned. I did not need to use my pre-planned arguments or my defence mechanisms. Instead of being walked over, I was walked through into an understanding that my job as a patient was to be supported and believed. A Harvard University study suggests that patients who are cared for by female doctors are more likely to leave a hospital alive (CBC news). This post is not to bash men. There are amazing doctors out there, both male and female. The purpose of this post is to acknowledge that sexism isn't only relevant in politics, media, the job force and schools, but every where, including our health care system.
A Reminder To The Women Who Are Silenced:
You are the only person who truly knows when something is wrong in your body. You as a patient, are the customer in this exchange, and the doctor has a duty to trust and support you and your health. As a woman, I need to demand better care for myself. I need to stand up to medical professionals who refuse to spend a few minutes listening to my health concerns, and I need to request proper treatment. I need to do this despite being labelled as a difficult patient, despite being called a know it all, and despite being looked down upon and made a fool of. I need to do this because I am a woman. You need to do this because you are a woman. We deserve to be heard.
In honour of international women’s day I want to thank my Naturopathic Doctor, Dr. Nadine Khoury, who heard me, trusted me and gave me a second chance at being young. You are so much more than just my health care provider. You are an inspiration and a role model to me and I am forever grateful for your work. I want to thank Rachel Hill, who helped give me a voice through her passion for advocacy, and all my lovely followers and friends that I have met since starting my blog back in May. I am eternally grateful for you. We must stand with each other and be the voice for all women.
In the wise words of Maya Angelou, “each time a woman stands up for herself, without knowing it possibly, without claiming it, she stands up for all women.”
Everything that has happened in your life has led you to this moment.
Thank you for reading,
Diagnosed with Hashimoto’s Disease and Hypothyroidism, Victoria Gasparini explores the reality of living with chronic illness through her blog, The Butterfly Effect. Victoria seeks to spread awareness of autoimmunity and writes to inspire chronically ill patients to live wholesome lives beyond their health struggles.
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