Body Talk

by Kelly Jensen

  All right, Dr. Yang, lay it on me: What are hormones, and where do they come from?

  So, hormones are proteins or substances made by glands. They travel through the body—usually in the bloodstream—to other organs and regulate many things. For instance, the pancreas makes insulin, which “talks to” several tissues and causes those tissues to either take in glucose (sugar) or remove sugar from the bloodstream. Your thyroid makes hormones that control temperature regulation, metabolism, regulation of periods—all that stuff. And one of the most important organs is the pituitary gland, located at the base of your brain. An extremely tiny gland, it regulates many of your organs that affect how you grow and the production of breast milk, and it also controls the adrenal glands, the ovaries, and the testicles in order to make the sex hormones (your estrogens and testosterone).

  Why are hormones so important but so hard to track or talk about?

  Hormones affect a lot of organ systems, depending on when and how much are produced, making their timing important for puberty, the time when hormones start being produced in your body. This also means young adults are very affected by their endocrine systems, as the normal cycles of your body are being created at this stage. Glands that produce hormones do so in a very controlled, cyclical fashion, which means they may be higher in the morning and lower in the afternoon. Because of this variation, when we draw labs, we get only a snapshot of what someone’s levels are—we can’t tell if the timing is off or if the hormones are going up and down a lot. Since it’s hard to “see” what the hormones are doing all the time, this may be why people don’t talk about them much. It’s difficult to pinpoint which hormone is fluctuating and whether it is the cause of certain symptoms.

  Sounds like a properly functioning hormonal system is pretty important for our development!

  Absolutely. Hormones affect many different systems, so if the levels are too high or too low or what we call dysregulated (too much or too little of a response), you could feel some symptoms. Hormonal issues are more likely to affect physical health than mental health, but this may be because the effects on physical health have been studied more—and are easier to sort out—than mental health. If one doesn’t feel well physically, that can affect how you feel mentally.

  So hormones can affect your mental health and general mood?

  Some hormonal fluctuations, like thyroid hormone fluctuations, can definitely affect your mood. Or cortisol, which is often called the stress hormone. Since hormones are cyclical, a person’s cortisol level is higher in the morning and lower in the afternoon. So if the hormonal level is high all the time, that would definitely create issues both physically and mentally. Another good example of this is the hormones that regulate periods. The pituitary gland produces hormones that regulate estrogen and progesterone production, and the pulsatility (velocity) of these signals can cause different levels of estrogen to be secreted at different times. The cyclical nature of these hormones’ production is the reason people with internal reproductive systems have periods. The hormonal level could also be controlled by other, external factors, such as severe weight loss or gain, medications, drugs, alcohol use, inadequate sleep or nutrition, etc.

  All this hormone talk makes me wonder how trans and nonbinary kids’ hormones might be playing into things.

  You should talk to Susan Boulware, a pediatric endocrinologist here at Yale.

  Great idea. Hi, Dr. Boulware! Thanks for speaking with me about this. Is there anything important to consider when it comes to trans and nonbinary kids going through puberty or dealing with their own hormones?

  When trans and nonbinary kids hit puberty, they’re really questioning their body, so if at puberty they have to proceed with the gender they were assigned at birth, it can be a very discordant process. Everybody, even cisgender kids, has a hard time going through puberty, but it’s really compounded for non-cisgender kids because their bodies are changing and they’re really feeling different from where their body is going. It’s hard to ascribe specific feelings, specific behaviors, and specific experiences to a specific hormone, because everybody makes both testosterone and estrogen, so the irritability and emotionality we all experience is not that different or due to gender. There is a decrease in anxiety when we give young trans and nonbinary people the hormone blockers, and a decrease in psychological distress, but there’s not enough data out there to say whether that is resulting from or relational to being placed on the blockers. It’s reassuring to be told some of what you’re feeling is due to changes in hormones in your body.

  Thanks, Dr. Boulware! That was so helpful. Dr. Yang, now I have to ask you about how hormones might affect our interpersonal bonds and/or gender expression.

  Well, while I personally do not necessarily subscribe to ideas about oxytocin affecting your interpersonal bonds, there is definitely a suggestion that hormones can affect people’s attractions, identity, and gender. For instance, girls who have congenital adrenal hyperplasia (a very complex disorder) may experience more gender differences than those without the disorder. And testosterone is present in and affects both male and female patients. In fact, sometimes gynecologists give low doses of testosterone to postmenopausal people to help with libido—the body is an amazing thing! Think about it: if you don’t drink enough water or get enough sleep, or if you eat junk food, your body just adapts, and you don’t even know that all this stuff is going on to keep it that way. Your body is working so hard every day to keep you in equilibrium. The most important thing we can do to treat our bodies right is to avoid abusing substances that are toxic, keep up with proper nutrition habits, try to get enough sleep, etc.

  But how can you keep track of all the ways in which how we live, what we eat, and the stress we encounter can affect our hormones when it seems so overwhelmingly interconnected?

  Well, the problem is that the body can’t talk to you and say, “Hey, you aren’t getting enough sleep, so you’re exhausted, and drinking energy drinks to stay awake is why you’re jittery and anxious all the time!” Keeping your body healthy can be difficult because you have to interpret the symptoms and figure out—alongside your doctors—what you are doing that might not be good for your body. And to complicate matters, everyone is different. So let’s say a lot of people in your family have diabetes because your family tends to have pancreases that aren’t able to make a lot of insulin. If you challenge your body with things that challenge insulin function (like eating too many sugary treats), eventually your pancreas might “poop out,” so to speak, and you might end up with insulin resistance or eventually diabetes. It’s all about listening to your body and talking to medical professionals; it’s their job, and they’re here to help!

  As someone who’s been overweight for most of her life, I wonder whether there’s a bigger connection between hormones and weight than maybe we originally thought. Where do you land on the matter?

  Thyroid hormones affect metabolism, so the standard thought is that high levels of these hormones in your body cause weight loss, and low levels cause weight gain. While in general this is true, it can be different for everyone. Part of this variability has to do with the hormones that bind to receptors in different tissues—some people may be very sensitive to the different binding characteristics and thus may experience different effects for the same hormonal levels. So your body may respond in a completely different way to the same levels of hormones as mine does. Plus, hormones are cyclical, and just drawing a level here or there can be misleading!

  Gosh, it can be really confusing to try to make sense of your hormones.

  That is why I think hormones seem like such a mysterious entity. There can be a lot of variability in the onset of puberty, based on nutritional and environmental factors, family history, and so forth. So a lot of this variability is what we call physiologic, or normal. It’s good to find out what is not normal, but remember, every body is different!

  Learning more about
your hormones isn’t some sort of one-size-fits-all explainer for your body’s specific behaviors. But it is like unlocking the super-secret elixir of life that makes you, well, you! And in ways you may not realize! Unlike other parts of your body, where things can be a bit more black and white, hormones are different for everybody, and how yours respond to things can be unique to you. It’s easy, sometimes, to listen blindly to those we think know better, but if anything, hormones’ uniqueness to our own systems is a great reminder to trust your gut when it comes to what you’re feeling inside your own body.

  Fart from the Madding Crowd

  by Kara Thomas

  Warning: there will be fart jokes. Probably a lot of them. So if that’s not your thing, clear out now.

  I was away for my first year of college, five hours from home, when the symptoms started. Terrible, gut-twisting pain in the middle of the night. Running to the bathroom after every meal. And most embarrassingly, gas that could clear the savanna like Pumbaa’s. Not exactly an ideal situation for me or my roommate.

  A strange gastrointestinal illness didn’t factor into my freshman-year plans. I wrote the symptoms off as the result of stress, since I had plenty to be stressed about—I hated living in a city, and my dream school was looking more and more like an expensive mistake each day. I stubbornly avoided seeing a doctor for months, until I arrived home for the summer. I was bounced from bored specialist to bored specialist (one politely asked if stress over college might be making me sick) until one shrugged and tossed a diagnosis of irritable bowel syndrome at me. I was too embarrassed to tell friends what was wrong. It even sounded ridiculous: I have irritable bowels. I imagined my intestines raging at me every time I had the audacity to eat: Bitch, are we really doing this again? The pills I was supposed to take before eating did nothing to alleviate my symptoms. By that point I had already transferred to my local state university for my second year of college, knowing I couldn’t possibly go away for school again as sick as I was, let alone to a school that was making me miserable.

  All the while, my symptoms worsened. The pain moved into my back, and the bathroom trips increased. More doctors, more horse-pill antibiotics I had to choke down with yogurt. Antibiotics with diarrhea as a side effect—what the hell was the point, then? I had just accepted my new hellish reality when I arrived home from my job at a deli and curled into a ball on my bathroom floor from the abdominal pain. My dad took me to the emergency room, where in triage my temperature clocked in at 104 and my blood count was somewhere in the range of how are you alive? I still remember the doctor strolling into the room, looking at the cup of urine on my bedside table, and proclaiming, “That is ridiculously infected.” I wanted to hug him. How low had I sunk that an offhand comment about my pee had finally made me feel seen? Finally, a doctor was taking me seriously and promising not to send me home until we knew what was wrong.

  That doctor admitted me, and what transpired over the next week was like a super-low-drama episode of House. I had a kidney infection. I was so anemic I needed a blood transfusion. My veins became so battered that after an hour of struggling, the nurse had to put the needle for said transfusion in my hand. Someone else’s blood going into my veins burned so badly that I asked her if my parents could stay with me, even though visiting hours were over. I caught her roll her eyes as she left the room; that’s what finally unglued me and made me break down into sobs. A nurse I’d never see again judging me for being a big baby.

  A slew of tests, a parade of doctors, but no one could conclusively say what was wrong with me until after the big kahuna of tests: a colonoscopy. Afterward, the gastroenterologist sat my parents down and told the three of us that it looked like Crohn’s disease. My dad immediately went pale and slumped out of his chair. (My parents have always had a penchant for drama. It’s true what they say about having only one kid: you never shed the new-parent neurosis, even when your kid is nineteen.)

  “Please get a grip,” I told him. “It’s not cancer.”

  The doctor, who is still my ride-or-die ten years later, looked at my dad. “Crohn’s is actually very manageable.”

  My dad’s response was swift. “My coworker’s son has Crohn’s. His gas smells so bad he can never leave the house.”

  Suffice it to say, I’ve been able to leave the house since my diagnosis. But navigating everything that comes with it has been more complicated.

  The quick and dirty on Crohn’s: it’s an inflammatory bowel disease that causes nausea, vomiting, abdominal pain, and diarrhea. The exact cause is unknown, but since it’s an autoimmune disease, genetics could play a role. There’s no cure. During a bad flare, I almost always wind up in the emergency room, vomiting Exorcist-style and in the fetal position from pain. I manage my symptoms with an intense medication every eight weeks that takes three hours to administer via IV at the hospital. The medication costs $18,000 per treatment; if I didn’t have insurance, I don’t know what I’d do. Die, I guess? No, Crohn’s is rarely fatal. But life would be unbearably miserable if I left my condition untreated.

  It took me seven years to find a medication regimen that worked for me—I tried every treatment, from injections to steroids, from low-dose chemotherapy pills to no treatment at all. But now, even the bad days are survivable, thanks to my obscenely expensive wonder drug. When I am grumbling over not being able to have that second glass of wine because I know it will make me sick, I remind myself that I’m lucky. My intestines haven’t had to be diced up, the inflamed pieces removed like sashimi. I don’t have to crap into a bag. People I’ve known for years don’t even realize I have a chronic disease, and that’s how I’ve always preferred it. No, we don’t need to talk about my inflamed bowels, just like we don’t need to talk about your healthy bowels. Unless you really want to.

  But living with an invisible illness is a double-edged sword. As much as I like being treated like a healthy person, there are times when I need people to remember I am not a 100-percent-healthy person. In my experience, you can’t have it both ways. There are days when my body cannot get its shit together (literally) and I have to yo-yo between the bathroom and my bed. Murphy’s Law of Inflammatory Bowel Disease states that my stomach must always act up at the worst possible moments. As I’m boarding an airplane. Right before an important work phone call. My second year of college, I missed a final exam because I was so sick I didn’t even remember I had a test that day. Begging that professor not to fail me was one of the most demoralizing things I’ve ever had to do. She icily agreed to let me take the exam only after I produced a doctor’s note. I knew what she was thinking: I’d sat in her class all semester and never once even looked sick. Now I was playing the Crohn’s card—I wanted special treatment, even though she had a zero-tolerance policy about makeups on the final.

  The screwed-up thing is that all these years later, I still feel like I cheated my way out of failing that exam.

  Living with my condition has made me hyperaware of the narrative around illness, or more specifically, the pain that accompanies many chronic illnesses. You’re weak if you can’t deal with pain, and you’re some sort of champion if you can. If the moral judgment surrounding coping with pain wasn’t evident from my trips to the hospital over the years, having a baby drove home the point. Are you doing it all natural, or are you getting an epidural? is everyone’s way of asking, Can you deal with the pain? (If you must know, no, I could not, and I took every drug they offered me.)

  Before I gave birth, a friend casually said that she was surprised I was worried about labor pains after dealing with Crohn’s disease for so long. I know she didn’t mean it to be cruel, but all I heard was Shouldn’t you be used to this by now? I am used to comments and advice from well-meaning people. Part of the reason I don’t advertise my illness is because there are too many well-meaning people who are happy to share opinions on something they don’t really know much about. Have you tried managing your diet? No, I have not tried healing my incu
rable disease with boiled roots and dandelion tea, but thanks for the suggestion. What about exercise? I know you think running and yoga can cure everything, Carol, but there are days I can’t even walk upright. And then there are the people obsessed with noticing my weight loss and complimenting me on it—I wasn’t able to eat for a week because of a flare, but sure, I guess I do look “great.”

  I don’t expect people to be 100 percent literate in How to Talk to Someone with Crohn’s. But if there’s any perspective I’ve gained from my own experience, it’s that people are obsessed with commenting on bodies. Specifically, women’s bodies. The size of them, what we put into them, what comes out of them. Obsessed, yes, but repulsed at the same time. Poop and farts are taboo. I’ve wrestled with the stigma of having an inflammatory bowel disease for years; why would I want to talk about something so gross? Why would anyone want to hear about it?

  I can only hope that by sharing my experience, I might help someone else feel less alone. Someone who is struggling with the shame might be encouraged to open up; someone who is too sick to see hope for the future might realize a normal life with Crohn’s is possible.

  My “normal life” is not ideal. The uncertainty sucks; my wonder drug has serious drawbacks, including a weakened immune system and an increased risk for developing lymphoma in the future. Someday, maybe there will be a cure for Crohn’s. Until then, I’ll continue to make jokes. It might seem glib to joke about something so serious, but my dad likes to say if you can’t laugh at something shitty, you’ll cry.