I finally remember why I delayed going to the hospital when I was 11 or 12 when I broke my wrist.

I didn’t want to set foot in an ER. I was petrified of the very idea of being surrounded by people in pain who were scared and unpredictable. At the time, I was still scared of everything. I would hold onto my mom and close my eyes as we walked past Halloween decorations in the store because masks scared the shit out of me. I had nightmares for weeks after watching Ernest Scared Stupid in sixth grade. I was afraid of the shadows in my room because I slept on a bunk bed with a curtained-off nook under it. Every night, I would vividly imagine the troll from the movie grabbing at my leg as I went up the ladder. I don’t have such a vivid imagination anymore. I can’t hold an image in my mind’s eye like I used to (aphantasia due to one concussion too many).

I’d seen the television show ER by the time I broke my wrist. I didn’t want to be anywhere near that environment. I remember liking the show quite a bit but also it making me a bit wary of the very human mistakes made in real life as they’d been presented on television. Like that time Carol Hathaway accidentally gave a patient the wrong blood products and ended up killing them. She pretty much forces the hospital to suspend her during a crisis with the nurses and the next episode is the one where she goes above and beyond during a store robbery committed by none other than Ewan McGregor (side note—that reminds me of how I first saw Mark Ruffalo in an episode of Due South)—the thing is, the ER was teeming with people. I hated crowds.

I get so uncomfortable with being close to that many other human bodies that I do things like hyperextending my thumb and nearly dislocating it to distract my senses. I get very overwhelmed by scent and a hospital is full of a variety of odors that run the risk of making me vomit. I held off on seeking treatment for a broken wrist for two reasons:

One, I was apprehensive of going to the ER because I saw every week that it was a place that was full of people. And sometimes there could be a freak medical error that would make things worse. I did not want to risk seeing something. I was scared.

Two, I compromised and had my mom make me a doctor’s appointment for the following day so I could get out of school early. I wanted to appear tough to everyone around me. I knew it was pretty bad—I’d heard my bone crack because of how quiet the snow made everything surrounding me when it happened. I was sick of being scared of everything. I didn’t want to be perceived as someone who was frightened by so much.

When the doctor saw my x-rays (the positions you have to hold your broken limb in hurt like fire to do) he said I’d broken my growth plate. I had a vision of being an adult with one child-sized wrist after he said that. I was worried it meant my wrist wouldn’t grow any bigger because I’d specifically broken the growth plate. I got put in this thing called a Sam splint until the folks who put fiberglass casts on could see me. It was basically a sheet of malleable metal covered in foam that they formed to my wrist. The fiberglass application was worrying because it gets pretty hot even with the cotton wrappings protecting my skin. (Side note—when they removed the cast weeks later they told me to tell them when the cast got too hot again and then they ignored me when I asked them to stop for a second to let it cool off. Why ignore me when I’m specifically mentioning what you warned me about?)

The doctor who saw me that day was the same one who said that the skin of my thumb becoming dry enough to crack and peel away was because I secretly sucked my thumb. He never believed me when I denied being a thumb sucker. He scoffed and rolled his eyes. He’s the one who cut my ear canal with a scope one time because he just jammed it into my tiny ear.

I don’t have a good track record with medical professionals. They always seem to think I’m a liar. I went to an urgent care for a UTI I’d developed from taking bubble baths every day for a very long time and I was on my period when I gave my urine sample so the nurse was alarmed by the blood. Then she didn’t believe me when I told her I wasn’t sexually active. She asked the same question about three different ways like she was trying to get me to change my answers or something. Every time I read or hear someone else’s ordeal with getting medical professionals to believe them when they say they aren’t sexually active I see some comment defending the idea that patients always lie. I’m not a liar and I resent being treated like one.

Like, I understand the need to do a pregnancy test before a medical procedure like an endoscopy but when the patient hasn’t had any fluids due to the procedure they’re about to go under for it’s really stupid to ask for a urine sample when a blood test is offered. I had dust in my bladder and they made me try anyway. I sat on the toilet with a cup between my legs for twenty minutes, told them exactly why I couldn’t urinate when I came back to the room with the empty sample cup, and then they did the blood test like I’d asked them to before they told me to go pee. And no one would take my word for not even remotely having the chance of being pregnant. I remember on House one of the things he always said was that patients lie. “Everybody lies” was on merch for House M.D. But that’s not true. You can’t just call a patient a liar and expect them to want to listen to your advice. If the doctor doesn’t believe you then what is the point? They aren’t going to care for you properly if they think you’re just a liar.

That attitude has kept me from seeking medical care. I don’t particularly feel like subjecting myself to that kind of pathological disbelief on a regular basis. Besides—all the specialists I saw for post-concussion syndrome ran out of ideas on how to help me. The neurologist referred me elsewhere when Botox made my pain worse. The migraine clinic said we’d hit a wall with treatment options. The Headache Institute kicked me over to pain management. Pain management refused to prescribe me things that worked like Vicodin and Tylenol 3 and instead put me on an NSAID that burned a hole through half my stomach and nearly killed me. Texas has banned delta-8 products so I’m about to run out of my migraine prevention since possessing a mere gram of it could get me jail time. I don’t want to go back to the doctor for it. I hated the medications I tried. I was having migraines almost every day before I started with delta-8.

I got a new insurance card in the mail because the previous doctor I’d been assigned left or something. I don’t know who this new doctor is other than the fact that it’s a man and I’d specifically looked for women doctors when I had to swap from the original Texas Medicaid program (STAR Plus) to United Healthcare (I still don’t know why I had to do this). I should make an appointment as a new patient but I can’t make myself do it. I gained twenty pounds on Celexa and I’m a bit angry about it. The SSRI didn’t even do anything to help with my depression and now I feel worse because my pants and shirts are tight. I don’t want to go to the doctor only to get told I need to lose weight.

I even have a tough time with the optometrist. I’m overdue a checkup by over a year but I can’t bring myself to make an appointment. Last time, it took me an entire day to recover from the prolonged interaction. Maybe it’s because I don’t talk to many people in general that makes my social battery so low. I don’t have the tolerance to withstand social interactions. Plus, having my eyes examined is incredibly uncomfortable—I not only have to respond to questions and make decisions in a split second but the lights are out and the doctor is shining a bright spotlight directly in my eye. I have refused to get my eyes dilated ever since they came up with the machine that can take a photo of your retina without the dilating drops. Purely because the step where the doctor shines a light in your eyes to see whatever it is that they need to see was a thousand times worse with eyes that have been dilated. I’m too photosensitive to withstand that.

My first memory is of being pinned to an exam table (the doctor was leaning all his body weight onto the hand pressed against my entire chest and it was hard to breathe) and having my ear infection drained—or something to do with digging in my ear. I was apparently so young at the time that my mom is really surprised that I remember it. I remember screaming because it hurt and I was scared because of how hard the doctor was pushing on me. I felt like he was crushing my chest.

So doctors have always made me wary. Yes, that pediatrician was helping me with my ear infection, but he didn’t have to nearly crush my chest. The pediatrician in Wyoming seemed to think I was a little liar and treated me like one even to the point of carelessly shoving a scope in my ear so hard that it cut me.

I’m good at masking my pain now. When I was about 13 I pulled a muscle in my back doing jumping jacks in Taekwondo. I had to run the mile the next day in P.E. and I was the last one that day because it hurt just walking. As my best friend walked with me back into the locker room we overheard our teacher complaining to another teacher that I’m always faking injuries. I have never faked an injury—I am exceptionally clumsy. But that was another instance of an adult thinking I’m a liar. From then on I tried to hide when I was in pain.

Now I’m constantly in pain and masking being second nature means people who don’t know me don’t realize I’m barely hanging on. I also know that going to see a new doctor about my constant headaches when it’s been so long since I’ve seen one about them carries the likelihood that this new doctor will think I’m lying. I hit my head so hard on the edge of a table that I got a concussion in 2014 and was quickly diagnosed with post-concussion syndrome after that first neurologist heard my history of concussions (plus the fact that I played a contact sport in high school) and I really don’t want to go over it all again with a new person. My imaging never showed anything wrong with my brain. Honestly, I don’t think anyone will have answers for why I still have a headache after over a decade until after my death when they study my brain (I’m donating it when I die).

That’s a sobering thought. I will never get to know exactly what my brain looks like after I die. I will never hear the pathologist or whoever ends up studying it describe what so many concussions at a relatively young age did to the structure of my brain. I follow Dr. Christopher Nowinski and the Concussion & CTE Foundation and understand how inevitable my post-concussion syndrome was after reading his research on the dangers of full contact sports at the youth level. There was recently a fifteen year old kid who died and was diagnosed with CTE. Dr. Nowinski has started a movement. “Stop hitting kids in the head.” He brings up the dangers of repeated head injuries in youth sports and having been in youth sports I feel very strongly about seeing things like peewee football where there is tackling involved. Concussions aren’t something to brush off.

I got a concussion during lacrosse practice when a teammate tripped me up and I slammed into the ground. I’ve written about it here before—I blacked out, had double vision when I came to, couldn’t stay awake on the way to the ER and in the hospital I was in and out of consciousness. I was out completely when they took my CT. They kept needing to wake me up. I’d hit my head during my very first time at lacrosse practice in my freshman year (didn’t even get an ice pack—all our main coach had to offer me was a slightly cold bottle of water) and got body checked a few times during games. Back then we weren’t required to wear protective gear beyond a mouth guard.

Now, I did wear a helmet once I was a goalie, so I was less worried about further head injuries when I was standing in the crease. Instead, I got pelted with the ball in my extremities (once I got hit directly in my bicep and my hand went limp for a while during practice) or on one memorable occasion during a miserably rainy game when I stepped in front of a shot that was meant to go between my legs but because I’m short it ended up hitting me full speed in the crotch and yes that hurts (especially when the cup in the padded shorts I wore hit me just as hard as the ball did in exactly the worst spot). My point is, as soon as I was playing a position that required a helmet I wasn’t afraid of getting another concussion.

I’m so curious what a cross-section of my brain will look like. Will there be evidence of it all? Worst of all, I’m worried my brain will just look average. I’ve seen my MRIs and I can’t really read medical imaging (though I do know what a brain bleed looks like on an MRI because I looked that up) but I do have a slightly abnormal brain shape. It’s subtle. If my brain looks average after my death, everyone will think I made up having a 24/7 headache.

So, I will never get an answer as to why no over the counter pain medicine will touch my headaches. I tried pain management but they weren’t comfortable prescribing me the meds that actually worked on the headache and thought Indomethacin was a good idea to prescribe “as needed” to someone who has expressed repeatedly to every doctor the clinic assigned me that my pain is constant and NSAIDs do nothing.

That’s another thing that’s keeping me from going back to the doctor. At the pain management clinic I lost count of how many different doctors I saw. It was a new person every single appointment and I had to rehash my entire history each time. I didn’t receive adequate care. In fact, after the Indomethacin-induced ulcer that nearly killed me, I don’t trust pain management to manage my pain at all. I had a medication that worked for me but no. They weren’t “comfortable” prescribing it to me.

I’m the one who is in constant discomfort. I spent so long during the process of applying for SSI proving my condition and trying to find treatment without success because every doctor I saw was stumped on how to treat me. And now it’s been so long since I’ve seen a doctor besides my psychiatrist that I have no desire to try again to find relief through the medical system because I’ve read too many accounts of doctors and nurses being heinous on top of my own experiences with doctors either harming me, downplaying my pain, or telling me I’m lying.

I will live in pain. I may have to spend all my time lying down in the dark to avoid increasing my pain, but I’ve gotten used to coping this way. My life is very limited. I haven’t driven a car in a decade because of how I will have moments where a road I’ve been on countless times no longer registers as familiar and the movement of other cars around me is overwhelming to my senses. It’s not safe for me to drive anymore.

When I was a kid I never considered what my life would be like at forty. I honestly wasn’t sure I’d make it this far. I tend to live one day at a time. I don’t like making plans because I never know how I’ll be doing any given day. I do go to therapy every Tuesday, but I often have to end sessions early because the pain is so bad that I’m having trouble speaking or I run out of spoons mid-session.

I think back on that kid who desperately wanted to be seen as tough—someone who was sick of being called a crybaby—to the point where she went to school with a broken wrist to get called out of class early for a doctor’s appointment to get a cast rather than going to the ER immediately when it happened and showing up to school the next morning with a cast already in place. If I hadn’t been afraid of everything in general I would have just gone to the ER in the first place. Having an appointment gave me time to work up the nerve to actually get myself looked at.