Category Archives: autoimmunity

On Not Being Afraid

A few weeks ago a friend asked if I was afraid to go to Scotland this summer, given Lyme disease and all. Before she asked the question, it had never occurred to me to be afraid.

“No,” I said. “I’m not afraid.” And it was true.

But then I wondered. Should I be afraid? Am I stupid for thinking I can travel with one carryon and a backpack holding a few meds and a lot of supplements? What if something happens? What will I do?

I second guessed myself because that’s what we do when we are afraid.

We think X is worse than Y or better than Z or whatever. I remembered how I boarded a plane to Glasgow six weeks after my mother died. I’d called my friend Cori in the Newark airport because I didn’t know how to sit still or sit alone with my thoughts back then. I needed chatter and to be heard. I was terrified to board the plane to Glasgow, but I wouldn’t admit it. When the plane came, I got on it and sat next to a Scottish man who looked like Father Time and slept from take-off to touch down. Then I got off the plane and walked into the scariest and best summer of my life.

I didn’t take supplements back then either, but I was on birth control. Since 19, I’d been taking those little pills with me everywhere and swallowing them every morning. I have rarely not traveled with meds. I know how to travel with meds. I won’t be a person who believes a diagnosis means she can’t do something she wants to do. I do what I want. (Someone, buy me this T-shirt).

And then, in June, two rheumatologists couldn’t agree on what was causing the pain in my left hand, my left elbow, one joint on one foot. One thought I had nonserologic rheumatoid arthritis, but couldn’t understand why I had no inflammation and no other evidence of this disease in my bloodstream. The other said I had spondyloarthropathy, which I had all the symptoms for, and the genetic markers, and which also runs in my family.

The first doctor was cruel and condescending spoke loud and slow and said “don’t ignore this,” as if I ignore everything that scares me. The first doctor wanted to put me on drugs that cause cancer and blood clots and hair loss and said if I wanted to get pregnant I couldn’t be on meds and “would have to suffer.”

The second doctor immediately suggested the most gentle, pregnancy-safe treatment option and was okay with me adding a promising alternative medication at the end of the summer, prescribed by another doctor. The second doctor didn’t want to take away my chance to try again for a baby. The second doctor said, “You’re the boss.” So I went with the second doctor. I started taking sulfasalazine. I started feeling better. I started feeling like my whole body was cooling down from the inside.

This is not to say I didn’t spend weeks second guessing myself, googling everything there is to google about spondyloarthropathy, sulfasalazine, low dose naltrexone, Lyme disease and autoimmunity, etc., etc., etc. This is not to say I haven’t vented nonstop to Carl or my friend Aaron (who remembers my doctor’s appointments), or haven’t lost sleep, or haven’t messy cried, or haven’t gone to therapy.

I’ve also awakened at 6 a.m., laced up my sneakers and run for an hour, or biked for an hour, or lifted weights, or walked and walked until I remembered: I am strong. I am not afraid. I will not be afraid.

In 2012 I read Cheryl Strayed’s memoir Wild the day it came it out. I was so excited to get my hands on this book.  For the first time in my life, I saw someone like me on the page. Someone who’d lost her parents in different ways, who’d lost her home, who’d seen the words family and trust disintegrate around the same time I did. I saw someone who was fierce and relentless and who carried her dead mother inside of her always and forever. In Wild, she writes:

 I knew that if I allowed fear to overtake me, my journey was doomed. Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me.

 I made this my e-mail signature. It’s still the most true thing about me. Sometimes I want to tattoo “Nothing could vanquish me” on my arthritis arm. Maybe I will.

I don’t know what will happen when I board a plane to Dublin a week from today, then another plane to Glasgow. I know I still carry the scared and do-it-even-if-you’re-scared 21-year-old with me, and part of this trip is about her, about going back to the places she walked and saying: You were so brave. You did the best you could. You didn’t fail your mother or yourself.

And part of the trip is about making new memories, about showing Carl more about the life I lived before him, about showing myself adventures and travel aren’t over just because of a diagnosis.

The 21-year-old, the 22-year-old, the 23-year-old didn’t know a thing about forgiveness or humility or trauma. But the 38-year-old has made understanding these things her life’s work. She’s got this. Trust her.

Difficult Choices

As a younger person, I lived in terror of making the wrong decision. When my mother was still alive, we’d dissect every option in front of me before I had to decide. I’d call her a handful of times a day. Tell her my problem. She’d steer me in the direction she wanted.

You belong here not there. You should do this not that. Make a list. Evaluate.

Hearing her tell me what to do provided tremendous relief. She was my mother. She wouldn’t steer me wrong.

But she was just guessing too. She was relying on her instincts, her biases, her fears, her expectations of who I was and who I should be. She was not teaching me how to make choices on my own, or how to be confident in my ability to discern what’s best for me at a given time. This dynamic is 100 percent normal.

Becoming an adult means learning how to steer your own ship.

No one can predict the outcomes of a choice. Sometimes choices can feel like life or death. Sometimes they are life or death. And yet, we have to decide. We have to go left or right or backwards or forwards or nowhere. We have be uncertain. We have to not know. We have to wonder and guess. We have to Google and stop Googling.

Being human is hard.

A therapist I used to see told me there were “no wrong decisions, only choices.” There’s truth in that statement. It’s also a little bullshitty. There are wrong decisions. We usually know what they are, even if we rationalize them. I’ve made a handful of terrible decisions. Sometimes I regret them. Sometimes I don’t.

I’m being vague in this post because there’s a difficult choice I need to make by summer’s end.

I will not go into the details. I will only share that this decision involves treatment for an autoimmune disease I have developed either as a result of Lyme, or concurrently with Lyme.

Thank you for not asking me for more information. Thank you for not saying “Get well soon.” Thank you for not talking to me about “getting control of inflammation.” My bloodwork shows no inflammation. I have worked so hard at getting control of inflammation.

Thank you for not foisting miracle cures or supplements or prayers on me. I’ve read the studies, the latest books. I’m an expert researcher and a smart person. I can understand and negotiate complexity.

Thank you for respecting my right to process difficult experiences through writing and to make decisions regarding my own medical care. Even though I am overwhelmed by this news and the choice I must make, I trust my ability to steer my own ship.

I do not feel sick. I do not identify as ill. I run multiple times a week at 6:00 a.m. I ride my bike whenever I can. I lift weights and take long walks and marvel at beautiful birds whose names I don’t know.

I visit with friends and binge-watch historical dramas on Netflix. (This one’s so good!) I plan vacations and write syllabi and enroll in classes and work on my book, which I swear I will finish and publish.

If I seem a little bitchy or defensive today, it’s only because I want to share this news. It’s too much to hold on my own. But I also cannot hold how this information is received. I cannot manage other people’s ideas about chronic illness. Being an adult means holding your own junk without spilling it onto other people. Writing helps me keep a tight lid on my junk. Writing helps me remember I am strong.

The last night of her life, my mother and I talked by phone about a difficult decision I needed to make. We talked about her illness too, how she’d started dialysis at a new place.

“I’m going to be okay,” she’d said. That was the second-to-last thing she ever told me. It was one of her last gifts. Hope.

I’ve carried this gift when I’ve gone left or right or forwards or backwards or nowhere without her.

It’s the map I’ve read a thousand times.

It’s the lamp I turn on in the middle of the night when I can’t call her.

It’s the song I listen to when I’m deciding what to do.

It’s the silence between knowing.

And not knowing.

There Is No Hiatus

I put this blog on hiatus in November 2018. I hadn’t posted in two months. I was working on other things. I thought I was clearing space to finish my book. I thought this blog was a distraction. I thought I’d get back to my book once I finished a few essays I’d committed to writing. I thought my Lyme Disease was under control.

But I didn’t get back to my book.

I wrote book reviews. I wrote grant applications. I applied to graduate programs. I wrote essays.

These were essays I needed to write. Without them, I wouldn’t be able to finish my memoir. With each essay, I saw the memoir’s possibility expand. I uncovered truths this book needed. I have a complicated process. Essays are part of that process. I told myself to follow the process. I’d get back to the memoir by spring.

But I didn’t get back to the book. In late February, I developed arthritis in my hands, with the worst symptoms concentrated in my left hand, my writing hand. I wondered if this was my body’s way of trying to shut me up? Of saying, don’t tell?

 I knew those questions were nonsense, but they were also important. They triggered my rebellious spirit. They reminded me to keep going. Bad things don’t happen for a reason. They just happen. To everyone.

My arthritis was just one more thing in a series of unfortunate things. But I remembered how I’d traveled alone to New York City the week of my Lyme diagnosis. I had dinner plans that weekend. I had a ticket to see “Tiny Beautiful Things” with my friend, Elizabeth. I was not going to cancel. Still, there was a moment when I lugged my suitcase through fresh snow in downtown Brooklyn when I wondered if I’d made a mistake. My legs wobbled as I walked. I could barely feel them.

But that weekend was also glorious. Elizabeth and I laughed and sobbed through the play, then met our friend Erika for dinner at a restaurant with the most beautiful pink walls I have ever seen. My friend Lauren showed me how the Manhattan skyline sparkled from a particularly snowy corner of Brooklyn. I also ran into my friend Javier, who I hadn’t seen since my mother died. We met for coffee my last morning in town, when we reminisced about our long-ago time as interns in D.C., and what had happened to us since then. I don’t regret this trip. At all.

I called on this same rebellious  adventurous spirit one morning in March while I drove to a writing workshop. As I wove through rural New Jersey, my wrists burned. I had never experienced this kind of pain before. It felt like someone was snapping a rubber band against my skin over and over again. It felt like someone was holding a lit match to my wrists between each rubber band snap.

This is bad. I said to myself. And I still thought the pain would go away on its own. I am so good at denial. Or hope.

 That night, I stood in the workshop host’s kitchen and told her what was happening. She opened a prescription bottle and gave me one tablet of Meloxicam. After swallowing the butterfly shaped pill, I slept without pain. Until the Meloxicam, I hadn’t realized how much space pain took up. I didn’t understand how pain took up energy I needed to sit at a desk for hours and write. I didn’t know how consumed I’d been by pain until I had a break.

When I awakened, snow covered the farm where the workshop was held. I walked around the cottage where I was staying and took photos of the gleaming countryside. Without pain, I could appreciate the beauty in front of me, the sense that I’d fallen into an Andrew Wyeth painting. I am always hushed in the presence of snow.

Then I realized I had to do something to manage the pain. How else would I finish a book?

The next week, I sat in a doctor’s exam room. This doctor was the one who had said, “I think you have Lyme Disease,” the first time we’d met. She’d ordered my tests. She’d diagnosed me over the phone in December 2018.

The diagnosis came five months after a pregnancy loss. Before my diagnosis, I had hoped to start trying again for a baby in January 2019, when I was 36. Instead, I began my first tri-antibiotic Lyme protocol. This past February, when I turned 38, I was down to two antibiotics and more than a dozen supplements. I swallowed upwards of 40 pills per day. I’d started to wallow too. In the doctor’s office, I cried. I don’t know why, but Lyme makes me cry harder, messier. Once I start, I can’t stop for a long time.

“Do you think you’re depressed?” My doctor asked.

“Who wouldn’t be depressed?”

Who wouldn’t be depressed?

In my doctor’s warm exam room, beneath paintings of New Orleans’ Jackson Square, I repeated the story I tell about my Lyme descent. It starts with an ER visit in July 2013 when I was 32. It meanders through years of doctor’s offices, lab tests, blood draws, and so much mansplaining. It always ends with the same line: I lost my childbearing years.

What a convenient story. There are clear heroes and villains. There’s a linear structure, a rock-solid timeline for childbearing. It’s a story that says the most important thing I could have been doing in my thirties was childbearing, mothering.

The problem with this story is that it ignores the essential things I did in my thirties, the ways I birthed myself. In those years of decline, I established my career, finished a degree, bought a house, strengthened my marriage, published, taught hundreds of students. I fought hard for myself.

I am undeniably different because of Lyme. My life is different, changed irrevocably. Going off gluten, dairy, sugar, and alcohol is really hard. Last night, Carl ate one of my favorite candies in front of me and I wanted to claw him. But I didn’t. I love him!

I’ve struggled for a few days with the question of how much to share on this blog, whether I should begin again, whether a hiatus is a good thing for me. I wanted to look “hiatus” up in the Oxford English Dictionary and interrogate its etymology in a way that would support my fear that the only hiatus in life is death. I realized it’s okay for me to have this fear, and I don’t have to validate myself with the OED.

This morning, I woke up at 6:00 a.m., fed the dogs, then climbed onto a bike I bought years ago with money I earned from travel writing. I rode down empty, golden streets while this blog wrote itself in my head. I couldn’t stop it. Why should I stop it? I don’t believe I’m on a hero’s journey, or that my illness makes me stronger or weaker than the person I was before. But it is giving me more to say and a greater sense of urgency. I’ve never been good at holding back. Or performing a different life than the one I live. Words, like truth, find a way.

So the blog is back on. The book is back on. Thank you for caring enough to read.

 

 

To All the Attention Seeking Drama Queens

In January 2002, my mother learned her transplanted kidney had begun to fail. She began dialysis. We spoke on the phone each night, and I visited her as often as I could. The mother I had known, the jubilant mother, grew depressed and fearful.

I offered to undergo a test that would determine whether one of my kidneys could be transplanted into her body. I was 20-years-old. She begged me not to have this test. She didn’t want to do anything that could compromise my chances of becoming a mother.

That is how much motherhood meant to her. She was willing to die in order to prevent me from making this decision. And she had hope. She hoped someone else in her family would come forward.

To my knowledge, no one did.

I write those words with tremendous anxiety of how they will be read: No one did.

My mother’s story is complicated. Perhaps someone came forward and she never told me?

Even so, she could not survive another transplant. Her death was inevitable, and within months of undergoing dialysis my mother began to accept this reality. For the first time in her life, she rejected the false narratives of cure and recovery so often projected on the seriously ill.

But I still harbored delusions. I called delusion hope. I pleaded with members of her family to understand the seriousness of her situation. I wasn’t ready to give up, to let her go. I believed she could recover, as she had recovered so many other times before. Others did not believe my mother was actually sick.

A relative told me my mother was exaggerating.

She said, “Your mother is a drama queen.”

She said, “Your mother likes attention.”

My mother was not a drama queen. She lived with a debilitating chronic autoimmune disease from adolescence through middle age. She was beautiful. She was sick. Because she was beautiful and sick and female, she fell prey to cultural biases that fail to acknowledge serious illness in young women. When people looked at her they saw pretty. They saw young. They saw stylish.

As my mother’s health deteriorated, I ignored her pleas. I had the test done. It was a simple blood draw – I barely remember the needle prick. In the blur of her multiple hospitalizations, and my struggle to perform normalcy as our lives collapsed, the test was not a big deal. Just one more errand.

My results came back after she died: I was not a good match. My kidney would not have saved her.

I was off the hook. I’d tried. She’d known I’d had the test. She’d known I was willing to give her a vital organ, even if that choice compromised my ability to become a mother. She knew I believed her. I had not abandoned her.

I’ve been remembering this time in our lives recently because of my own experiences of not being believed about illness in the past few years. I have also felt abandoned by friends and family who do not communicate with me in meaningful ways about Lyme disease, for which I am still being treated  — and this treatment takes a physical and emotional toll. To many, it is as if I am not sick at all, as if my illness does not exist because I present as able-bodied.

Is my illness easy to erase because I am young and female? Or because I am capable of holding down a job and publishing writing, so I cannot have a serious illness at the same time? Or is it because I typically do not perform a sick identity on social media?

Or maybe, I’ve just needed too much, and my needs are exhausting. Autoimmune disease. A miscarriage. A broken foot.  And then, out of nowhere, Lyme disease?

Maybe I am now perceived as the attention seeking, drama queen.

But I am not an attention seeking drama queen. Attention gives me anxiety. And drama?  Who has time for that?

Fatigue from Lyme disease and my current treatment plan means a lot is changing in my life. I cannot engage in relationships in ways that are expected of young women. No late nights. No long drives. I have to say, “No” a lot. Perhaps my “No” is heard as disinterest and not as self protection. Perhaps people think I don’t like them.

My mother gave me tools I would need to navigate chronic illness in my own young life.  She taught me I could say the word ill and the word did not have to be a negative, a reduction, something to resist or erase. Even now, she is present. She is parenting me when I need her the most, showing me the way.

Long ago, she told me illness would distill my relationships.

“You will know who your friends are,” she said. And she was right. I am figuring out who I can depend on and who I should let go. I am asking myself new questions.

Who will I become? How will illness change me?

That’s the keyword. Change. Lyme disease has remapped my body. I have no delusions of cure, of going back to who I was before. Healing is a complicated idea, not a portal to our past selves.

As Cheryl Strayed has written, “Healing is a small and ordinary and very burnt thing. And it’s one thing and one thing only: it’s doing what you have to do.”

What I have to do now is be honest. Be real. Set boundaries and hold tight to them.
Rearrange a life where I’d once felt comfortable. Advocate for what I need. And then, let go of stories, people, goals, relationships, identities, and expectations that no longer support the person I am becoming because I am ill.

This is not about needing attention or being a drama queen or even pessimism. It’s about surviving and reclaiming and persisting.

A Year of Revelation

My mother’s mother, my Bubbie Fran, watched me frequently when I was a child. Once, while eating scrambled eggs, I reached for the salt shaker on her kitchen table. My grandmother swatted my hand. I looked up at her furrowed face, and my own face contorted in confusion.

“Why did you do that?” I asked.

“Salt is poison,” she told me, while stirring two fizzy saccharine pills into her otherwise black Folgers.

There were other poisons in her apartment, too. Sugar. Fat. Cholesterol. From my grandmother, and ultimately my mother, I learned that food could be dangerous and even deadly. My mother reinforced a contradictory food message each time she had an insulin reaction, when only sugary foods could save her. In ordinary time, these foods were forbidden: cookies, candy, sodas. But they held the power of God each time her blood sugar dropped.

We both internalized the belief that the worst thing a woman could be was fat. Our bodies were our currency, and thin bodies made us visible, gave us back the sense of control we lacked in our lives. For years, I was thin, and I took my thinness for granted. I believed being thin made me better, made me good, made me worthy. I think differently now. After years of food restrictions, I refuse to deny myself pleasure. I refuse to limit what brings me joy. I’m at the top end of my weight range right now because I take pleasure in eating. I cannot control whether I get sick, even while eating foods I used to fear. That has been the hardest and most poignant lesson of 2017. I am not at fault for my illnesses. Neither are you.

________

Here’s a list of all the foods I’ve eliminated over the years:

  • Sugar
  • Salt
  • Dairy
  • Soy
  • Alcohol
  • Caffeine
  • Grains
  • Raw cruciferous vegetables
  • Fruit

________

Restricting my diet escalated my anxiety. I could rarely eat with other people. I missed family holiday dinners because I feared not having control over the menu. Once, on a meditation retreat, I awakened in the middle of the night in a sweaty panic about quinoa. By restricting my diet, I thought I could cure myself from an autoimmune disease and other mysterious medical symptoms. This line of thinking, while quite common in our culture, is also a form of victim blaming. I believed what I ate made me sick, and I believed what I didn’t eat could make me well. I believed I had power, and I believed I didn’t have power. If I ate the wrong foods, I deserved whatever ills befell me. Food could be a miracle cure, and food could be poison.

I am not alone in my beliefs. Morality and magical thinking have long been associated with eating ––  take it all the way back to Genesis ––  and many women are taught to reduce food intake, to deny ourselves the pleasure of eating in a culture that denies or seeks to limit our power. Also, our oldest stories, our fairytales, imbue food with danger and magic. We are taught to feel shame when we indulge in the pleasure of eating. And when we do not feel worthy of food, we do not feel worthy of pleasure or joy.

________

Earlier this month, a new female physician listened to my mysterious symptoms, viewed another rash spreading across my neck, and said, “I think you have Lyme Disease.”

I laughed. But it turns out she was right.

The last time I pulled a tick off my body was in 2011. I’ve had a handful of bizarre rashes, but never a bull’s eye. And my former GP tested me for Lyme in 2015. Although my labs showed some abnormalities consistent with Lyme, he dismissed my symptoms and the results. In retrospect, he should have ordered repeat tests, as my abnormalities and symptoms were consistent with an early infection.

My new labs showed no autoimmunity, and no abnormalities associated with an autoimmune disease. Despite the fact that I’ve been eating all the foods on my forbidden list for months, my thyroid health is improving.

2017 has been a year of revelation.

Food did not make me sick.

Food could not make me well.

________

The other day, I saw a meme circulating Facebook. The meme pleaded with women not to make New Year’s resolutions to lose weight, and especially not to talk about weight loss goals in front of their daughters. The meme asked women to consider eating as a means to a nutritional end, a practice in body love.

If only our lives were so simple. I know many women who want to follow this logic, who’d love to follow this logic, and yet food and our bodies are so fraught with anxiety and contradictory messages, that we don’t know how to start to free ourselves. We have been given few tools for fighting back against a culture that frequently diminishes our bodies, our habits of eating.

I am by no means cured from my food obsessions, and I still fight against the desire to restrict food. I fear that my diet will be restricted once I begin long term treatment for Lyme Disease, but I hope I will advocate for myself in new ways in 2018. I will not follow a doctor’s advice without doing my own research or seeking a second opinion.

I want less resolutions, less restrictions.

I want more revelation.

We cannot control what happens to us. We can only surrender.

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.