Activism in Action: Health Advocacy

posted by 
Naomi Finkelstein
  /  
February 28, 2019

The doctor's office can be a tricky place to navigate for many of us. While of course there are many wonderful doctors in the world who save lives and change them for the better, unfortunately there are also those who are ill-informed, full of pride, and lack bedside manner. These doctors can make our health pursuits challenging and complicated to say the least.  

The purpose of The Body Positive's End of Year Challenge is to give our community the opportunity to share their stories and experiences with one another. The hope is that this will inspire and empower others to live a Body Positive lifestyle, with concrete examples to help you as you travel on your path.

Each year, the prompt for the Challenge is based on one of the Competencies of the Be Body Positive Model and this year, the chosen Competency was Reclaim Health.

The goals of this Competency are to uncover the messages that have influenced your relationships with your body, food, and exercise and to develop a weight-neutral, health-centered approach to self-care. The benefits are that you become the authority of your own body by sorting out facts from distorted societal myths about health, weight, and
identity.

The prompt was: Write about a time that you advocated for yourself or someone else at a doctor's office or in a medical scenario. What was the challenge you/they faced? How did you handle it? And what was the outcome?

MM Stein

Here I am for another quarterly check-up, in the waiting room where I sit for 20 or so minutes waiting until the nurse comes to take me to the exam room where I will wait at least another 20 to 30 minutes for the doctor. In the meantime, to keep me busy, I am weighed and measured, my blood pressure checked, my temperature taken. Vital information regarding my vital statistics because numbers make the person, not life, not circumstances, and certainly not the actual person.

At long last, he enters, confident and friendly. The doctor looks at my numbers. My thyroid numbers. My temperature. My blood pressure and pulse. Then at last, my weight.

Ah, there it is, the cause of all my ills and troubles. If only I would get my weight down to a socially acceptable number, all my health troubles–physical, mental, emotional–would magically disappear with the “unwanted” pounds.

I am ready for him today.

Never mind the borderline Anorexia that I lived with for 15 years until I was thankfully able to recover. Never mind the Hypothyroidism, or the Fibromyalgia that would magically go away if I exercised every day, or the Irritable Bowel Syndrome/Gastrointestinal issues I have had literally my whole life. Never mind the high blood pressure and damaged heart valve that resulted from a combination of genetics and surviving full-blown pre-eclampsia that caused preliminary kidney and liver failure. None of that matters. All my health issues are because of The Fat, which I have because obviously, I lounge about all day, every day, while enjoying “naughty” foods and beverages.

However, I am ready for him today. I brought my backpack – a heavy appendage I carry all over campus with me as I sprint from class to class, building to building, sometimes having to cover long distances in limited time, in all types of weather, just to teach, so he can weigh it, feel it, for himself. This is in addition to what I call the “mom purse,” another heavy bag of survival equipment I carry daily. Add on all the daily running I do as a parent, the spouse of a stroke survivor, the sole caregiver for an elderly parent with health and mobility issues, the volunteering, and day-to-day chores and errands and anyone can see there is no time for lounging, but I take the time to make sure that my doctor does.

I also tell him that my weight does NOT define or determine my health. My size is my size and there is a WIDE range of typical body shapes and sizes (pun intended) that are “normal.” Treat my health issues – do NOT bother me about my weight/size, do NOT tell me that exercise will cure my Fibro or my Fat or anything else.

While he does admit that carrying the gear I do for the time and distance I do is exercise and that all the other day-to-day activities are, too, he is not ready to give up just yet.

I add that exercise does improve mobility and muscle and bone strength, but it does not make all-consuming pain and fatigue from a jacked-up nervous system go away, nor does it stop the immune system from attacking and demolishing the organ that manufactures the hormone that controls my metabolism and energy levels, and it certainly won’t fix my mitral valve or GI tract.

We next play “Food Police,” and when I tell him more facts about food and nutrition than he can spout at me, he eases up on that as well, especially when we agree that there are WAY TOO MANY unhealthy and dangerous things hidden in our mass-produced food supply.

He finally acquiesces and gets down to the job of actually treating my actual health issues and no longer tells me that “ideal” size = ideal health. The new alliance has held for 5 years now. He now keeps to actual medical history and family history/genetics and I keep him as a doctor.

To be in touch with the author, email mmstales@gmail.com

Anonymous

I wonder how to share such a private and significant struggle in my life. What gives me courage is the hope that by sharing, it will help another break the isolation and shame that comes with sexual pain. I also want to liberate my younger self, the part of me still carrying shame and sadness, and tell her there is nothing to be ashamed of, it is part of my life story and my story is beautiful.

I was 29 years old, planning my wedding, a time that should have been joyful, exciting, and fun. However, I began having severe pain in my pelvic and vaginal area. I went to my gynecologist and he prescribed medication. I hoped this would solve the problem. It did not. My wedding day was steeped in discomfort and excruciating shame. During my honeymoon, sex was so painful.  Newly married, and I couldn't bear sex with the man I loved and I felt too ashamed to even tell him. I came home, finally told my husband, and proceeded to go back to my doctor. He kept prescribing the same medications, sent me to a urologist who found nothing, and sent me back to my doctor, who looked at me in disgust and told me there was nothing wrong with me and what I needed was a psychiatrist. I left his office feeling completely hopeless and lost.  

My doctor...looked at me in disgust and told me there was nothing wrong with me and what I needed was a psychiatrist.

By this point, I was in the second year of my marriage. I was severely depressed. I remember seeing other women, complete strangers, and feeling so profoundly inadequate and ashamed, believing I was the only one. One day, while lying on my couch, I listened to a doctor on a talk show describing exactly what was happening to me. They gave a number to call. I called, got an appointment, and got affirmation that my symptoms and the struggles I was experiencing were very real. It was a condition called Vulvodynia.

Fueled with information that validated a real condition I went back to my doctor so that if another woman came to him with the same symptoms, he would be able to help her. I wish I could say it went well. My doctor was dismissive and terse, not even wanting to look at the information I brought. I never saw that doctor again.  

I am a strong advocate for myself. This is my body and I am the only one living Her experience.

Today I am 55, beginning my journey into menopause. I find myself again dealing with sexual pain, but because of what I have been through, I am profoundly committed to living a vibrant and active sex life. I am a strong advocate for myself. This is my body and I am the only one living Her experience. There is so much help available, and I find this help only when I stop believing I am the only one, break the isolation, and start talking about it.  

To be in touch with the author, please email info@thebodypositive.org

Kaley Sechman

I am writing this as a dietitian, a woman, and most importantly for these purposes, a daughter. I am the daughter of a strong woman who has always been an inspiration, an amazing role model, caregiver, and friend. Over the course of my adult life, I have witnessed my mom endure (with a smile on her face) pain from degenerative joint disease that affects both of her knees to the point that she needs a double knee replacement. She has been living with the pain for years with minimal complaints. It wasn’t until recently that the pain has become unbearable for her.

I am continuing to learn about how to do better and advocate for those who are marginalized, including my mom.

After avoiding surgery for years, my mom recently dug up the courage to seek out orthopedic surgeons to find someone who could help her. Unfortunately, she only encountered discrimination and weight-bias, which has left her feeling defeated, ashamed, and discouraged—something she often experienced when seeking out medical care. (And here’s a kicker—she’s a Registered Nurse.)

I have recently been fully awakened to the extreme amounts of bias and discrimination that individuals in larger bodies face in the healthcare system. This is why, as a dietitian, I have been practicing under the Health at Every Size® paradigm and learning more about how to do better for everybody. I have become increasingly aware of the immense privilege living in a thin body allows me and I am continuing to learn about how to do better and advocate for those who are marginalized, including my mom.

My mom (everyone) deserves quality, un-biased care. She (everyone) deserves to live a full life.

After learning the details of my mom’s experience with not one, but two “highly recommended” orthopedic surgeons, I was furious and hurt for her. I was not going to let this be. My mom (everyone) deserves quality, un-biased care. She (everyone) deserves to live a full life. I pooled together my resources (research included) and together, my mom and I composed a letter to send to the healthcare system that treated her so poorly. We detailed her experience with these doctors and provided high quality research to support our points. A few short days following the submission of her letter, she received a call from a patient advocate who was going to do an investigation into my mom’s case and assured her that she would help her find an orthopedic surgeon who would treat her with dignity and respect.

Because this unfolded very recently, we do not yet have a resolution or a future direction, however, I am hopeful. I am grateful that my mom trusted me enough to share with me. I am grateful that she allowed me to be an advocate for her—something she has done for me and others countless times…

To be in touch with Kaley, email dietitiankaley@gmail.com

Kate Mammolito

I survived without a period for seven years. It started at 22, when I went off birth control for the first time since age 17. This, of course, was a double-edged sword. No cramps, bloating, chaotic mood swings, edginess, cravings, discomfort from enlarged breasts. I mean, who wouldn’t want to stop getting that darn thing? But unfortunately, a healthy period is a sign of a healthy, functioning system chock full of critical hormones and active ovaries. So while the symptoms suck, NOT having those symptoms, in the long-run, sucks even more.

I saw a few Gynecologists, one being a very prestigious, top university-accredited specialist, and all of them wanted to put me on birth control again to stimulate my ovaries. Their diagnoses were always vague, and their recommendations to “fix” the problem included only medications and hormone supplements.

What started out as “healthy living” soon became a full-blown eating disorder.

What I failed to mention, and shockingly, none of the doctors ever asked, was that I dropped a huge amount of weight over a short period of time. What started out as “healthy living” soon became a full-blown eating disorder. By the time I came home from freshman year, I was barely eating.

My body, which I’ve now accepted, is as stubborn as my brain. It knows its set-point weight. So the more I starved myself or ate in a disorderly way, the harder it was to maintain the weight loss. Ups and downs, both mentally and physically. My body and my spirit were an absolute mess, and so were my hormones.

So at 22, without the birth control to stimulate my ovaries and keep my hormones at bay, I just stopped getting my period. No doctor ever asked what I was eating (which wasn’t much) and how much I was exercising (which was a lot). One doctor even said, “Well you lost that weight so long ago, so that wouldn’t affect your cycle now.” Another said nutrition wasn’t their "area of expertise.” Eye roll…

I left the office with the nurse practitioner’s comment in my head. “These meds will help you lose weight,” she said with a smile. “You’ll be so much happier when we see you next.”

It took seven years to finally get a natural period and that did last about two years. But stressful shifts in life happened and slowly, my cycles, like my happiness, became less and less. I was stressed for a multitude of reasons, including my living environment, unhealthy relationship, etc. etc.

So at 31, I went to my fourth endocrinologist and they diagnosed me with Polycystic Ovary Disease. Along with being placed on Metformin, which helps regulate insulin since PCOS can make you insulin-resistant, I left the office with the nurse practitioner’s comment in my head. “These meds will help you lose weight,” she said with a smile. “You’ll be so much happier when we see you next.”

I’m 35 now. I stopped taking Metformin two years ago since it didn’t seem to be doing much. I spent my 20s and early 30s believing I would never be able to get pregnant, all because no medical professionals paid attention to the mental and nutritional end of things. At 33.5, I walked into the bathroom and bam, there it was. All natural. And I’ve been regular ever since. My fifth endocrinologist monitors me monthly, and I’ve been PCOS-free to-date.

So how did this happen? Eating normally. Removing myself from an extremely unhealthy relationship and moving into my own apartment. Landing a great job. Diving way deeper into yoga, body positivity, and meditation, and refusing to settle for relationships that don’t support my wellbeing.

I don’t care what any healthcare professional says about the correlation between a woman’s hormones, menstrual cycle, diet, and mental well-being. If they do not ask me these questions up front, I do not go back. It is absolutely all connected, and calming the hell down is critical to alleviating so many health problems we as women today experience.

This is my silent advocacy. Sharing my story, and never scheduling a second appointment with a doctor who doesn’t honor my mind/body connection.

To be in touch with Kate, email kmammolito@gmail.com

Naomi Finkelstein
Naomi is a Chicago-raised, Berkeley-based Jill-of-all-trades. She has over a decade of experience working in education and has worked professionally as an actor, writer, yoga instructor, and artist. She has been working with The Body Positive since 2014 and is also a wellness coach, with a passion for working with people in large bodies who want to pursue wellness on their own terms, without the pressure of weight loss. You can learn more about her at www.naomifinkelstein.com.
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