Category Archives: hashimotos

Why I’ve Left My Last Male Doctor

On Sunday night, an itchy, painful rash appeared on my back. I took off my shirt, faced a mirror, took a photo of the rash and texted it to my friend Anne, my husband, my sister. We all need someone we can text photos of our rashes to in the middle of the night, right? I am grateful for my people.

The next morning, the itching turned into a tingling, burning pain. I drove to urgent care and lifted my shirt once more while a doctor examined me in a box-sized room.

“Definitely shingles,” he said. And I started to cry because I’m not used to men believing me when I tell them something is wrong. I am not used to medical professionals taking my health seriously. I live in the body of a woman. I am used to being gaslighted. I am used to being dismissed, disbelieved. I am used to being objectified and shamed.

At each doctor’s visit since my miscarriage, I am reminded of the midwife who told me she wouldn’t confirm my miscarriage because she didn’t want to be wrong and “look stupid.” I am reminded of how another person’s ego can matter more than my body.

I saw my GP the day after my diagnosis. I asked him to clarify when I could return to my exercise routine. He avoided my question and spoke at length about how my shingles ridden body is a danger to pregnant women in the first trimester. He did not tell me to quarantine myself, as the chance that a pregnant woman would catch chickenpox from me is profoundly rare and involves skin-to-skin contact. I’m not in a sexual relationship with a pregnant woman. Nor do I have plans to walk around topless in order to infect a topless pregnant woman with chickenpox. My life is not an episode of “Crazy Ex-Girlfriend.”

So why would this doctor speak such absurd words to me, if not to remind me that my body is less valuable than a fertile, pregnant body?

But I doubt my doctor was conscious of the message underlying his words. My experience is that men are frequently unconscious of gender bias or gender inequality. Claiming ignorance allows them to claim power, to claim women’s bodies. Patriarchy looks like this, and like this, and like this, and like this.

My experience of my GP is that he enjoys being the smartest person in the room, and his answers matter far more than my questions. I should have left him two years ago, when he minimized an abnormal TSH test. But I was sick, and I needed help. I did not have the energy to find a new doctor. I was willing to put up with this doctor in order to get the medical treatment I needed at the time. Women learn to put up with a lot of bullshit in order to get what we need, and I am no exception.

I wish I could be more assertive. I wish I were not conditioned into silence, obedience, people pleasing.

At my urging, my GP recommended two endocrinologists –– one female. He cautioned me that she had “a strong personality.” I am now a patient in this female endocrinologist’s practice. She is among a small number of “outside” physicians that Johns Hopkins surgeons trust to interpret thyroid ultrasounds. Hopkins values her medical opinion, whereas my GP’s language insinuated those opinions as threatening.

We live in a society where “strong personality” is code for opinionated, is code for bitch.

I am okay with being opinionated. I am not okay with being perceived as a bitch because this perception makes me easier to dismiss as unstable.

In the past year, I’ve lived more fully into a life with an autoimmune disease (Hashimoto’s thyroiditis). I’ve learned that I need to dismiss doctors who dismiss me. I’ve learned to trust that sinking feeling in my gut when a doctor talks over me or says something absurd.

This has largely meant leaving male doctors in favor of female doctors.

I didn’t stand up and leave my GP’s office the moment he failed to answer my question. I did make a follow up appointment with another physician the next day. I chose a female physician recommended by a friend who lives with autoimmunity and chronic pain. She has taught me to reach out and build a network of female patients and practitioners who can support me.

My experience has been that female physicians listen to my concerns and prioritize my health more often than male physicians. Recent research published by JAMA Internal Medicine supports my experience, although I have certainly been dismissed by female medical professionals. Yet these experiences are far less common.

Years ago, I read a magazine article that said female diabetics are fifty percent more likely to die than men. While I no longer have the article, more recent research supports this idea in regard to type-1 diabetics who have renal disease, as my mother did. I long wondered why she fared so poorly in health systems as a juvenile diabetic, especially because she was a registered nurse. Why did she die while wearing an insulin pump? Did gender bias hasten her death?

After her organ transplant in 1994, my mother became a patient advocate. She created brochures for patients that I edited. She wrote letters-to-the-editor. She helped change healthcare laws in Maryland, and I went with her to the Maryland State House when she testified for the General Assembly.

We never talked about gender bias in the medical profession, or how the gender bias of a society threatens female bodies in countless invisible and insidious ways. That cultural conversation simply wasn’t happening when she was alive.

But I like to think we are living at a moment when a shift has begun, when  voices are rising up to shatter silence. I like to think her legacy propels me to speak out and make change for myself and others.

She showed me what an advocate could look like – in her case, an advocate became a woman in a hospital bed, a woman in a wheelchair, a woman tethered to dialysis machines. She taught me all bodies deserved respect. My body deserved respect.

I wish I’d believed her the first time.

 

 

On Speaking Up

Two weeks ago, I sat in my endocrinologist’s office and waited … and waited … and … waited. I had an 8:45 a.m. appointment. He entered the room at 9:25 a.m., more than 30 minutes late.

Then he rustled through my latest labs, which showed a worrisome increase in thyroid stimulating hormone. Despite my efforts to lower TSH through an autoimmune diet, exercise, meditation, and supplements, I came to that appointment with a hard conclusion: Starting medication would be the kindest thing I could do for my body.

Twice during this appointment, my endocrinologist raised his voice at me. The first time, it happened when I named my ideal TSH level.

I chose this level after researching blogs, books, and studies about Hashimoto’s, hypothyroidism, pregnancy, and miscarriage. The doctor made it clear he did not care how I had arrived at this number I chose. He invalidated my knowledge, which I came by honestly and with professional expertise.

When I heard the sharpness in his voice, I felt tears welling, but I breathed. I remembered the metta prayer. I placed my right hand on my heart, so that I would remain calm and unemotional, given how gender bias negatively impacts the way male doctors may relate to female patients. (How dare I speak at all … )

The second time he spoke sharply was when our conversation veered toward medications. I expressed my discomfort in taking medications that contain gluten, sugar, or lactose. The most popular thyroid medications contain at least one of these ingredients. I asked my doctor to confirm that the prescription he was writing would respect the boundaries I needed to set.

“I don’t have time to answer your questions,” he replied, his voice rising again. He may as well have said, Shut up. Because that’s the silencing implication of his words, which he spoke at a volume I perceived as disrespectful.

For me, being silenced is worse than being yelled at or not being listened to. It’s a complete invalidation of my voice, of my right to speak on behalf of myself. Silencing says, You don’t matter. Your ideas don’t matter.

Later, I looked up the medication’s ingredients myself. (In less than two minutes and without an MD, I found them on the manufacturer’s web site.)

The next morning, I called my endocrinologist’s office because I needed to address the silencing. I needed to say silencing is an unacceptable communication tactic, as far as I’m concerned. I needed to know it wouldn’t happen again.

So I said I felt frustrated by my appointment. I said I felt disrespected by my doctor. I said my previous experiences with him had been positive, and that his behavior seemed out-of-character. I asked for assurance that I could trust him to be attentive and respectful at future appointments. The woman with whom I spoke said she would pass this information along to the office manager, who would call me back.

I’m still waiting for that call back.

I guess I shouldn’t be surprised by further silence, but I am. I’m surprised because I tend to expect the best in people. I’m disappointed, too. I’m also angry.

Even as I write this, I feel my heart clenching, my throat tightening. I want to scream, just so I will be listened to. Just so I will be heard. That was all I wanted from my endocrinologist that morning. A little understanding.

But I also know I’m extraordinarily lucky. Because I had a mother who taught me my voice mattered. She taught me to be skeptical of physicians, to do my own research, to ask my questions, and to fight for respect if it was denied.

My mother became a patient advocate after her experimental organ transplant in 1994, at a time when the field was still relatively new. Her own experiences taught her that advocacy is what all patients need in a healthcare system that, at its most broken, can be deeply dehumanizing, especially to women.

The worst part of navigating an autoimmune disease isn’t doctors who behave badly. It’s not having my mother beside me. It’s having to go alone to doctor’s appointments when I feel anxious and scared.

But the best part is learning to see myself as powerful, even in situations when a doctor’s behaviors intend to deny me power. My mother taught me to get back up when I felt knocked down, to keep going. She taught me I deserved kindness and respect. She taught me not to accept anything less, especially from men.

I don’t know if I’ll continue seeing this endocrinologist. There are many, many endocrinologists in the sea, and I’m resolved to find one who can handle a patient like me, a patient who does her own research and who speaks for herself. That’s the only kind of doctor who deserves my money, trust, and time.

Last week, I went to my first appointment with a functional medicine physician. We sipped tea in his office, and he listened. He showed me a chart with all possible medications and their ingredients. He ordered much more detailed tests than my endocrinologist has ever asked for. He told me he has “a passion” for Hashimoto’s because his wife and daughters have the same disease.

I felt comfortable telling him how I dreamed of my mother the night before our appointment. I shared that, in my dream, my mother was on the phone with my endocrinologist. She was shouting at him to order a very specific endocrine test, unrelated to thyroid disorders. I told him the test she requested was now on his new lab order. He just smiled.

I don’t know what will happen next, or what my future tests will reveal. But for the first time in a year, I am not afraid of the unknown. I feel understood. I feel heard. I feel safe.

 

Blogs That Have Helped Me The Most: 

 

Books That Have Helped Me The Most: 

 

 

Life Forward & Backward

My mother couldn’t ride a bike. She tried. I have one memory of her mounting a red road bike and pedaling around the block. For the rest of her life, the bike sat in our laundry room collecting dust.

I relate deeply to the scene in Steel Magnolias where M’Lynn, grieving her daughter’s death from juvenile diabetes, laments: “I’m fine! I can jog all the way to Texas and back, but my daughter can’t! She never could!”

I have always felt that scene in my whole body –– bones, blood, muscles, tears. Everything opening to M’Lynn’s words, unleashing a rock hard truth living at my core. My mother was sick. I was healthy. She died. I survived. I will not be sick.

For my whole adult life, I’ve been healthier than my mother, more alive than her, proof I’m promised a different fate. And I’ve had to prove this every single day. I’m not a marathoner or triathlete. That is too normal, too organized, too legit. My exercise habits have been secretive and ritualistic and irrational.

On some days, I have walked 40,000 steps, and felt like that wasn’t enough. I have run seven miles in 90-degree heat, then hiked the day away in the Blue Ridge Mountains and dehydrated myself. Right now, I have had the same bruise on my right toe for six years, and only recently realized it came from running in the wrong shoes.

I love the euphoria of a good run, but I’m not addicted to it. I’m addicted to proving I won’t die young like my mother. I will not be 48 and bound to a wheelchair. I can run or bike or swim or weight-lift or kayak. I can downward dog and stand on one foot for ten seconds. See? I’m fine.

Last summer, it became clear that I was not fine. I couldn’t get out of bed. I gained 16 pounds, despite not changing a single thing about my diet. The most exercise I could do amounted to numbingly slow walks in a park near my house. Then a rash appeared on my legs. It looked at first like small mosquito bites, then looked like pinprick clusters of dried blood when I looked closer. I’d never seen anything like it. The next day, I laid down on a doctor’s examination table.

It took six months, many blood tests, and an ultrasound to discover I had an autoimmune disease, not the disease that killed my mother, but an illness that, like hers, affects my endocrine system and binds me to her in a strange and familiar way.

My mother’s type-1 diabetes caused her immune system to destroy her pancreas. My Hashimoto’s thyroiditis is causing my immune system to destroy my thyroid, the seat of my energy and metabolism.

When I was diagnosed in December, I only told a few trusted people. I didn’t want to be different, sick, defined by an illness, have anything “wrong” with me. I didn’t want to be like my mother in this way, the worst way.

I tend to be an over sharer, but this is the first time I’ve blogged about Hashimoto’s, yet not the first time I’ve written about the disease. This September, Hippocampus Magazine will publish a micro essay about my diagnosis that I finished in February. The essay braids an experience of discovering my mother’s disease with the pivotal experience of discovering my own illness, which is undeniably linked to hers. Like all creative nonfiction, the essay is about more than the situation it describes. It’s about a larger story of how the past and future can flow into one another, how we can be there and here at the same time, and how we can long for a different life than the one we are living.

This week, while I was finishing another essay set in the years immediately following my mother’s death, a time that still feels excruciating to peer back into, my friend Lisa told me to keep writing. Then she sent me this quote from Soren Kierkegaard: “Life can be understood backwards; but it must be lived forward.”

How I loved receiving those words, the wisdom and hope that they carried, and the truth that unfolds through them. Still, when I look forward to my own future, I see more uncertainty than I’m comfortable facing. Sometimes I see nothing at all. Sometimes I see a flight of possibilities.

My diagnosis changes the story I tell about myself and shadows what I thought would be true for my life. When I look backward, I see my mother’s dignity and courage and strength; I see my own fear running parallel to her death for too many years. I see that  if we live long enough, we will all have experiences of our bodies becoming different and incapable of holding us the way they once did. I see a story I never expected, a story I don’t know.

I wrote that Kierkegaard quote on an index card and taped it to my desk, next to my mother’s laminated cremation certificate and a shrine of stones I keep beside it. In the morning, the stones catch the sun and glitter for a moment, reminding me the future can be uncertain and hopeful at the same time, defiant and sparkling with light.