Tag / medical mistrust

by Gabrielle McLean

Lowercase Infertility

Is your life today what you pictured a year ago?

You’re so young, yet you’re running out of time. You’re so young, until you’re not. Until you labor over getting the timing just right, and realize that Life doesn’t work that way. Until you feel your proverbial biological clock ticking like a time bomb in utero.

You’re so young, unless you want children.

Infertility is a secret word – a whisper between women trying to be decent – until it’s your word, and suddenly it’s the loudest thing you’ve ever heard. Suddenly, you want to scream it. Over and over and over and over.

Before the big scary “I” word ever looms over you, your expectations are probably akin to the famous intro of the movie Up: you meet a boy, fall in love, receive devastating news from a heartfelt doctor, and you make the best of the rest of your life with the love of your life, just a little emptier than planned.

But no one tells you that it can be a word casually thrown around between potential diagnoses underplayed by a tired surgeon. No one tells you that different opinions will rattle around in your periphery 24/7 – one doctor will tell you to give up and have a hysterectomy while another laughs at the prospect of anything being wrong at all. No one tells you that the word may never come up. Not directly. You figure it out, slowly, after hospital visits and failed attempts and a body that feels 30 years its senior. No one warns you that it’s rarely a one-and-done diagnosis, but a long rollercoaster until something either works, or you get off the ride. You might have infertility or you might have INFERTILITY. Wait and see.

You expect to decide, in equal measures of excitement and terror, to have a baby and then you just…have one. 9 or so months later. Maybe, more likely, it just happens. Uh-oh, we’re going to have a baby, and then you figure it out all the same. But sometimes, a uterus goes from being just a body part to morphing into your biggest enemy. How dare you backstab me now? We were supposed to work on this thing together.

How did I get stuck with this angry, angsty, broken thing, when everyone around me got perfectly normal, happy, cooperative bellies?

The reality is that no one wants to hear about it, because it’s one of those uncomfortable topics in the grander societal sense. Taboo, or whatever. It’s not anyone else’s fault that it feels wrong or dirty or too hard to navigate. It just exists, simply. Even though it’s the farthest thing from simple.

I’ve realized that time heals the wound for everyone else. Again, it’s not their fault. What else is there to say? Let’s move on, collectively, because it’s uncomfortable to remember awful things. And it is awful. And you are uncomfortable and I am uncomfortable and it’s better to just not go there. So, we play pretend. Or, I do, mostly.

I pretend not to mind that I don’t get wished a happy Mother’s Day anymore, because it really is a bummer. Loss, no matter how infinitesimal, sticks to your insides and just stays there. Forever. I pretend not to mind when mothers complain about their children, because they’re not living my life. Everyone should be able to complain, just as I can think, “But what a beautiful thing you have.” I pretend not to mind when my own girlhood disappears, because everyone else’s went straight toward their children. That’s the way the world works, but damn, it’s lonely. And damn, it makes you feel like an ant as mothers watch you with either pity or jealousy. I live in a world where I get to be selfish and I get to do whatever I want, except the one thing I really, really want. So on, I pretend not to mind as my friends lose interest in me, because I am no longer interesting on my own. With no child at my hip, my likes and my quirks and my own self are simply not enough. I wonder if they ever were, or if we were all playing a game, waiting for the appropriate childbearing years in order to become interesting to one another. But I was interested, and I miss being on the same playing field. I miss commonality. Community less tied to the one thing I am incapable of, temporary or not.

A year ago, I was in the hospital. And a year ago, I thought I’d have my own health disaster wrapped up in a neat bow. Not so much fixed, but dealt with. Handled enough to move on and join the kid club. But so quickly does that door start to close. So quickly, does everyone rush inside. So quickly, do you resign yourself to watching it close, imagining a life on this side, forever.

It’s still happy, just a little emptier than you planned.

by Gabrielle McLean

Nov. 29, 2024

I stood stock-still, staring at myself in the bathroom mirror as a wave of pain came and went. 10 seconds, I counted. Only 10. A small miracle, I decided, as the memories of the last time I felt that deep burning in my stomach flashed in the back of my mind. A constant reminder that I’m a ticking time bomb. A constant reminder to be ready at all times, even though there’s no preparing for it. There’s no relief.

Will I survive the next time? Will I be carried out of my home in the hands of an EMT who will scroll on his phone in the ambulance as my eyelids flutter with my failing efforts to stay conscious? Will I once again dig my nails in my poor husband’s skin and beg for death?

How many times do I have to scream, until someone hears me?

Doctors have to hear it all day – the complaints, valid or not. Exaggerated or not. But I don’t ask for help. I don’t like to be a bother. My pain tolerance is high and my disdain for strangers prodding at me keeps me away from their prying hands…it took the little strength I had left, the loss of my pride, the primal desperation to survive despite my verbal pleas otherwise, to ask for help. But my quality of life is rapidly depleting and I have no more answers than the day I started asking questions. I can’t survive hearing “That’s normal,” ever again.

I wonder if I’ll still hear it as I’m lying on my deathbed. I wonder how long I can wait, helpless, for someone to listen long enough to fix me before I’m too far gone. I wonder if I’ll ever be healthy enough to manage normal things like keeping a tidy house and maintaining hobbies and having children. I wonder if it’s too late. I wonder when the constant pain, sickness, and exhaustion will drive me to insanity.

It’s been over a year of loss. My friends, family, my health. It’s been a painful, awful, lonely time in spite of the small joys in between. A lifetime of confusion and endless effort. I’ve thrown my hands to the sky and asked God, “What have I done so wrong?” with no reply. I still have faith, after everything. I still do, because I have so little else left. So I keep trying, despite myself. I take what I can get where I can get it and pray through the tears.

I pray to know what healthy feels like, I pray for a world that makes more sense, I pray for a more empathetic world, I pray to become the kind of person people want to keep around, I pray for those I have lost. I pray, because I need someone to hear me. Because it’s all there’s left to do.

by Gabrielle McLean

Medical Mistrust

There’s an episode of Golden Girls in which Dorothy goes to her doctor to figure out why she’s been sick. After coming up short, her doctor suggests that maybe she’s simply lonely. Maybe she’s sad because she’s divorced. Maybe her social life isn’t full enough. She says that she’s so exhausted she sometimes cannot speak, but this makes no difference to him. He reluctantly shoves her off to someone else who does the same. He belittles her, tells her she is simply getting old, and suggests trying out a new hair color or going on a cruise. He shames her for coming to him at all, comparing her symptoms to the outwardly extreme conditions of his other patients, like not being able to walk or swallow or breathe. 

Dorothy eventually gets an answer and she gets to throw it in the face of the doctor who disregarded her. It’s a satisfying end to an all-too-relatable series of events. 

I’ve been exhausted for as long as I can remember. I get days or hours here and there where I experience what I assume to be normal life for most people, but it always sends me into a depressive spiral because instead of enjoying those fleeting moments, I am all to aware of what life could be like and it’s so beautiful that I don’t know how to handle it. Everything is constantly drenched in a sort of fog, and those few lucid moments are like being awake for the first time. I know it will fade. The fog will keep coming back.

I was told that I needed to go to bed earlier, to get off my phone 30 minutes before laying down, to pray. I’ve always been addled with nightmares in the times where I can manage to sleep. I was told that life is hard and it’ll only get harder. Life was hard because I was quiet. I needed to socialize more. Join a club. Toughen up. Children were starving in Africa. Eat better. Practice gratefulness. Exercise more. I starved myself of nothing but leaves and bananas and peanut butter, then exercised every spare second I had. I worked on a farm. I volunteered at church. I worked with children. I worked at a library. I was a photographer. I went to a Christian college and studied English, like I’d always wanted. I couldn’t have anything wrong with me because I was so active. I looked so healthy. I was doing everything right. Worry less. Focus on myself more. Rest. Life was hard because I was in a new grade level, a new school, I was getting bullied, I started a job, I started college, I got a boyfriend, I got new friends, I started another job, and so on. It was normal, I was told. I would naturally adjust. 

I never did. I got depressed, and somewhere along the way they put me on birth control. It was supposed to fix everything. Level me out. I subsequently turned into a suicidal zombie. I went from living in a fog, to being completely checked out of life.

I always mentioned my exhaustion to my doctors. I mentioned my most debilitating and consistent symptoms in hopes that it would eventually amount to some sort of a conclusion. I was typically met with a dismissive reply or told to try another brand of birth control pill. I wasn’t asked questions. I was too young to have anything truly wrong with me, so surely it was simply a phase I’d grow out of. It was just a bout of depression. But I’m 27 now, and though things have improved since refusing any more birth control, I am still living in that familiar fog. I still have lucid moments that make me cry. I have a steadily growing list of medical issues that I can’t bring myself to resolve because I have no trust that I will truly be heard. I believe, because it’s the only experience I’ve known, that I’ll be given the same generic advice that’s spouted to everyone else. Advice that I could, and did, get out of self-help books and Youtube.

I’m angry at all the years I spent half asleep. The youth I’ll never truly get to live because I was so busy trying to feel alive. To feel anything at all. The present and the future in which I may very well be stuck with no more clarity than I received up to the point I stopped asking for help. 

I’m still exhausted, so I’ll be told to go to bed earlier and think happy thoughts to avoid the nightmares. I eat well and I’m active and still can’t lose weight, but have I tried cutting out dairy? Gluten? Red meat? Drink more water. I have a long list of foods that I can’t eat without getting sick, so maybe I just shouldn’t eat those things. My hair is falling out, so I should wash it less. Or more. Or cut it shorter. I’ve miscarried, but that’s normal. It’s time to move on. I was assaulted and therefore panic every time I go to the gynecologist, but I need to woman up. They’ll once again ask the room, “What’s wrong with her?” The walls will close in on me and I’ll forget how to breathe and I will leave prematurely. I live in daily fear of the next time a cyst ruptures, because I blacked out from the pain last time even though they’re “not supposed to hurt that bad.” Because I clawed at my husband and begged for help that wouldn’t come. Because I’ll just be told to take Tylenol next time, as if I can predict it. As if that does me any good. 

It’s normal. Don’t worry, they’ll say. Everything is normal. Take birth control and come back in 6 weeks.

I don’t know when I will try again. Soon, I keep saying. Soon, because all I have are theories and fears and pain and I’m so, so tired. Soon, because I’m nearing the deciding age for having children. Soon, because I have a family I love and want to be around for. Soon, because I have no alternative. I know there is medical trauma awaiting me, and I don’t use that term lightly…but I’m terrified that I’ll subject myself to it just for it all to be in vain. That I won’t be heard or my theories will be wrong and that will be that. But I want to enjoy every second of my damn good life. I don’t want to be in constant fear. I don’t want to be too tired to do the things I love. I want to feel alive and be healthy enough to have kids. I want a body that doesn’t fail me at every turn and I want answers to a root cause rather than a temporary, surface-level reprieve. 

Despite my experiences, I believe in nuance in everything. I don’t see all doctors as super villains to fear. I had one positive experience that keeps me from completely giving up. Doctors are obviously people, like everyone else. I don’t think every patient is a saint. I don’t even think I am an easy patient. My problems are complicated, I cry easily, I struggle to communicate, and I’m jaded. What I see is a profession filled with people so exhausted and jaded themselves, they can’t turn on the humanity when it’s needed. They can’t afford to care, because caring either hurts or wears them out further. I also believe there are doctors who choose the profession to be on a constant power trip, or they do the work so long that they get cocky. I believe there are good doctors, good patients, bad doctors, bad patients, and a whole lot of complicated in-betweens. 

While I have empathy for the in-between and pray for better working conditions for the good, what I can advocate for is what I know and what I know is that medical mistrust is rampant. I know several people with medical trauma that was either wholly induced by or at least not helped by the people who were supposed to care for them. People who were supposed to either have answers or help find them. I’m absolutely not the worst case of this. It’s not just me. It’s not just fear. It’s a lack of trust in a world that has completely thrown empathy and consideration to the wayside.

When my mother-in-law was diagnosed with cancer last year, it was not like the movies portray it. She didn’t go to her annual check-up or have a sudden medical emergency and get told by a watery-eyed doctor that she has cancer. She had to fight for answers for precious months while she literally wasted away. While she got thin, lost all energy, and became forgetful. She was fading before our eyes and her doctor refused to take her seriously. Her doctor treated her like a nuisance. The hospital turned her away. She didn’t get to have a Dorothy moment. No one apologized when she was diagnosed. She simply started her treatment just in time to save her life. 

Dorothy said it best:

“I came to you sick – sick and scared. And you dismissed me. You didn’t have the answer. Instead of saying, ‘I’m sorry. I don’t know what’s wrong with you,’ you made me feel crazy, like I had made it all up. You dismissed me. You made me feel like a child, a fool, a neurotic who was wasting your precious time. Is that your caring profession? Is that healing? No one deserves that kind of treatment, Dr. Budd, no one. Had I been a man, I might have been taken a little more seriously and not told to go to a hairdresser. […] I don’t know where you doctors lose your humanity, but you lose it. If all of you at the start of your career could get very sick and scared for a while, you’d probably learn more from that than anything else. You’d better start listening to your patients. They need to be heard. They need caring, they need compassion. They need attending to. Someday, Dr. Budd, you’re gonna be on the other side of the table, and as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me.”