Category Archives: autoimmunity

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.

 

 

Not Everyone Will Like You

First grade was hard for me. We moved to a new neighborhood, and I started first grade at a new school.

I’d finished Kindergarten at a Jewish nursery school in Baltimore, and I read way above grade level. I also read on the bus, at the bus stop, and under my desk in class. When other kids played outside, I stayed inside to read.

Another girl started teasing me. She called me a bookworm and told other kids to do it too. Bookworm! Bookworm! They yelled. I cried about the whole thing to my mother.

Here’s what she told me:

“Not everyone will like you. There’s nothing you can do about it.”

She said these words simply, with no explanation. She did not tell me that these children were wrong not to like me. She did not tell me I was wrong for wanting to be liked. She simply spoke the truth as she understood it.

Not everyone will like you.

Of all the things my mother ever told me, these words are among the most important. She freed me to be myself. She freed me to not waste time winning over people who were never going to like me. She freed me from good girl conditioning that leads to the toxic trifecta of people pleasing, repression, and resentment.

Still, I didn’t learn the lesson immediately at 6. That day, I sat on her lap, while she ran her fingers through my hair. I breathed her Youth Dew. I sobbed into her dress with the floral collar.

I said, “Mommy, why won’t they like me?”

“They just won’t,” she replied.

I wanted everyone to like me. Sometimes I still do. But I also know that likeability is a trap for women. And I am coming to believe that my health depends on risking not being liked.

________

This has been a hard week for me. I had lab done work last Friday. My endocrinologist’s office left a vague voicemail message on Tuesday, asking if I could come in as soon as possible. (Don’t you love those messages?)

Short story: my TSH is increasing, even though my endo upped my dose of Levoxyl in December. My TSH has been increasing since I started Levoxyl in September. After six months, my TSH is still too high for me to safely sustain a pregnancy. My body is not responding to one of two medications I can take to treat this condition. My choices are limited because the widely prescribed meds contain ingredients like gluten and sugar that are not safe for me.

I turned 36 on February 16. My window of fertility is closing.

I received this news at work because that’s where I spend most of my time. I closed my office door. I texted some relatives and friends. A few wrote back. A few haven’t. It’s hard to hold other people’s bad news. It’s hard to face the truth that not everything works out in the end. Not every illness can be remedied.

Before class, a colleague asked me how I was doing. We were casually chatting in the bathroom. I told her the truth about the news I’d received. I said, “I know a lot of people say ‘fine’ when asked that question, but I’m not feeling ‘fine’ right now. I’m sad.”

I risked not being liked for being an oversharer. I risked her potentially saying, TMI and dismissing me. I risked her potential silence.

She said: “That’s what I love about you. You say what’s actually on your mind.”

I am so grateful to work with women who have the emotional capacity to be present to one another in times of distress. I am so grateful to work with women who do not hide who they are.

________

Last week I also spoke up about an ongoing issue at my gym.

Short story: I’ve fallen in love with Spin. (Spin is the best thing ever!), and I love my spin instructors. I am steadily increasing muscle mass while decreasing fat because they push me.

But something is happening to make me feel irritated, annoyed, and bitter in Spin. This something is this:

Class members are engaging in behaviors that gym policy doesn’t allow. They’re getting to class 15 to 20 minutes early, saving bikes with towels or other personal items, then leaving the room, sometimes entering late to mount a “claimed” bike. These behaviors appear entitled, even if that’s not their intention. These behaviors might not bother most people, but they bother me. I perceive them as unfair. I perceive them as degrading shared community space.

I needed to speak up about my feelings because repressing emotion negatively affects me. I’m also afraid it is affecting my thyroid health. This is not magical thinking. Countless studies support that stress adversely affects autoimmune conditions. My thyroid is located in my throat, the seat of my voice. I believe self-silencing damages me.

This morning, a person with the power to enforce gym policy told me that people would complain once the policy was enforced. They wouldn’t be happy. They might not like me. (Because I publically removed gym towels from a bike this morning, I will likely be known as the instigator of the policy’s enforcement.)

I said, I understand. I don’t care if people like me.          

 And I really meant it. I truly did not care. This doesn’t mean I’m not a compassionate or empathetic person. I care deeply about other people’s thoughts and feelings. But I can hold my own truths alongside those of others, even when our truths contradict. I know disagreement does not necessarily equate with delegitimization.

My mother’s words, spoken so long ago I barely remember them, came back to me this morning, as I left Spin. I thought of how her voice, which I can no longer remember, still instructs me, still shapes and forms me.

Not everyone will like you. There’s nothing you can do about it, I thought, as I walked to my car, buoyed by relief, feeling pressure in my chest dissolve. Feeling free.

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.

 

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