Body, Brain and the Constant Dismissal of Pain
You’ve been in pain for 25 years. Since the day you got your first period, things have been painful.
So painful that you stay in bed for two days straight.
So painful that you call into work sick.
So painful that you miss birthday parties, drinks with friends, outings to the beach.
But you knew when you suck it up and pull through. For weddings and graduations and school days with quizzes.
Smile on your face, knives in your uterus.
When you were 19, the cramping was so bad that you insisted your mom take you to the hospital. You really thought you must be dying if the pain were that bad. The doctor told you that you were dehydrated.
When you were 35, you went to a third doctor to find out why the bleeding from your period lasted 3 weeks of every cycle. All of them told you it’s just how your body works. Even though the third doctor, a gynecologist, flushed saline through your uterus to look for problems. There were none she could find. And that was the last test she could think to run.
She forgot to tell you the test would trigger the cramping. It was so bad that you had to crawl from your front door to your bed once you got home.
When you called that doctor to ask for pain medication, and an explanation — “Why didn’t you say there’d be cramping?” — you were told that you’re sensitive to pain.
You still don’t have an answer about your painful periods. But you have more stories.
My story is probably your story, too. That’s why I’m here.
I have more stories. With more doctors and more therapists.
I spent years depressed. Anxious.
I spent years complaining about the uncomfortable size of my breasts and the back pain that came with them. About the never-ending bloat that no one else my teen-age seemed to have. And again, the depression and anxiety. The fatigue. Unable to control my weight. On their own, just things. But added together, all signs of hormone imbalance.
Years, sharing this information and more with doctors, from the time I was 16. No one — not once — thought to take an in-depth look at my hormones. A simple pee test. One that is fairly affordable.
It wasn’t until I was 36 and saw a naturopath — look all you want, but I don’t care, it was life changing — who actually saw these as symptoms and did more than a blood test.
(As a side note, my doctors had always run blood tests, but only the kind that look at my thyroid. And if my thyroid was fine, then my hormones must be fine, by the doctor’s evaluation. They weren’t.)
And she was right. My estrogen was so high that it was out of range. My testosterone was low and threatening to breech the line on range. After more than a decade of this, my sex drive had bottomed out. Lethargy was my default state. But all my doctors had insisted that my numbers were fine, so I must be too. Experience be damned — what the patient says has no weight.
But despite all this, I built a life to be proud of. A straight-A college student who graduated Summa Cum Laude and Phi Beta Kappa. I enjoyed a career for a decade as a journalist and editor, and then made a successful transition into becoming a commercial photographer. I build a six-figure business as a full-time artist. I left a bad marriage. I found a soul mate. I came out to my parents. I had fulfilling and loving relationships. My friends are pretty awesome. And my family supported me the whole time. I live in one of the greatest cities in the world (Yes, Los Angeles, and I’ll stand by my statement forever.)
All this, despite my ADHD brain. Have I mentioned that yet?
It wasn’t just the inability to focus or the daydreaming that’s much more characteristic in women with ADHD (men tend to outwardly exhibit hyperactivity with ADHD, but women tend to deal with inattentiveness — hyperactivity of the mind. Because it’s more of an inward presentation, it tends to get missed.) I’d always read about those notes, but just figured, hey, we all daydream. I might get carried away in thought, but that’s not ADHD.
But one day I was reading an article that said another characteristic of ADHD is the inability to control the volume of your voice. And I thought… huh. Huh. That’s. That’s interesting.
My whole adult life — let’s look back 25 years again — all of my loved ones and partners had to point out, on many occasions, how loud I was talking. I had no idea.
I assume my coworkers were too polite to say anything. I’m probably right.
And then I looked into it. Did you know you can tell multiple therapists about all of these things, and they’ll never once think to have you tested for ADHD:
- ADHD brains have trouble focusing on things that don’t interest them, but get hyper-focused (and hyper-chatty to anyone who will listen) on subjects that fascinate them and lose hours to it. We forget to sleep, we forget to eat, we forget to leave on time, because we’re doing a deep dive into how the pyramids were built.
- Speaking of eating, did you know that women with ADHD are more likely to have an eating disorder (classic binge eater here). I think this is for a few reason, but here’s one that’s easier to pin down:
- ADHD brains have less dopamine, dopamine receptors and serotonin levels. And eating comfort food gives our brains a big ol’ dump of dopamine.
- Speaking of dopamine, having less of it makes us seek out things that are a bit more extreme for satisfaction. But we’re also a bit more extreme in most things: The volume of our voices, the way we react to things (both happy — so excited!!!!!! — and sad).
- Also, our executive function is broken. This is a big one, so if you’re only half-reading, tune back in: The executive function is like the ignition starter of the brain’s engine. So picture this: Every single person’s brain has a filing cabinet in it. When you want to perform a task, even a simple one, like making coffee, you use your executive function. You turn on the ignition, walk to the filing cabinet, look for the drawer labeled ‘morning routine.’ You open the drawer, look for the folder labeled “coffee” (it’s all alphabetical), pull out the folder and open it. You perform your task. Once the coffee is made, you close the folder, put in back in the drawer and walk away.
- But in the ADHD, we have a couple of major obstacles. First, our ignition starter is broken. It just doesn’t turn over unless we actually want to do a task that interests us (this, btw, is the reason we have so much trouble getting motivated to do simple things, like shower or drink water). And even when we override that, we have a much bigger problem.
- Now, the information is our filing cabinet is the same as a normal brain. Smart isn’t the issue.
- The problem is that our filing cabinet doesn’t have labels. Or folders. Or any kind of clear order. All the papers are just kind of stuffed in there randomly. It’s a lot of work just to find a simple task and execute it. It can be overwhelming. It often feels like failure.
- People with ADHD may have a higher rate of non-heterosexuality (Hi! Bi!)
- And guess what — ADHD brains have trouble sleeping, too. My night owl tendencies are less of a mystery now. Also, we’re more prone to delayed sleep phase syndrome.
- ADHD people tend to be more sensitive to sounds, and Misophonia is more common among us. So my inability to deal with the sound of people chewing, or the leaf blower outside, or the refrigerator buzzing, now makes way more sense. Other people told me I was weird, and I didn’t understand why random sounds that interrupted my (finally! focused!) thoughts made me irrationally upset.
- And to wrap it up with the ADHD symptom that most often f**ks up my world — but know the list goes on — Rejection Sensitivity Dysphoria is a huge obstacle for ADHD brains. This isn’t just sensitivity to rejection; all brains feel that on some level. This is a sensitivity to perceived rejection. To wit: As a photographer, sending out a photo gallery to a client always came with an episode of intense anxiety every time. Even when they were great! I wasn’t just worried they’d hate the photos. I was worried they wouldn’t love the photos enough. To give you an idea, here’s a typical conversation I would have with my partner after getting an email back from a happy client:
- Me: They emailed back and said the photos were good. Good!
T: That’s great!
Me: Ugh, no, they’re just being nice. I’m sure they hated the photos. If they really liked the photos, they would have said the photos were Great! Life changing! PERFECTION!!!!!!!
But hey, everyone just told me I was regular old “too sensitive” while I was growing up.
There wasn’t a single therapist over the years that didn’t have this information. And not a single one of them thought to test me. What does un-diagnosed ADHD lead to?
Anxiety. Depression. A feeling of always being outside the norm. Frustration at the fact that other people seem to function just fine in a world that is overwhelming and confusing and unfair to a neurodivergent brain.
This world was built for normal brains.
And to be clear, I don’t like the words normal or weird, but I’m using them because it makes this all simple and clear to the “normal” brains who are reading this. (But to get into a little bit, I think my brain is the normal one and the rest of the world is weird. My brain appreciates logic and the social contract, which no one else seem to stick to. Y’all are the weird ones.)
So, the world was built for normal brains. Living in this world with a weird brain is a special form of effort that no one without a weird brain can understand.
I mean, you just tell yourself to take a shower, and then you do it.
But for weird brains like me, we have to build our lives in special and specific ways so that we fit into (or, seem like we fit into) the world that is made for normal brains.
To be extra extra clear, I’m furious. I’m furious at the years I spent in pain, both physical and mental, that all my doctors and therapists ignored. Even my family didn’t put the pieces together. I would share and share again the trouble I was having, and I would be told from every side:
You’re too sensitive.
You’re too loud.
You care too much.
It never escapes me, the amount of time I could have spent living my life differently. The nearly two decades that could have been spent healing or understanding, and instead, I’ve only told myself how weird and stupid and ridiculous I am. The shame I put on myself, a laser beam I acquired from other people. Professionals I paid to help me.
I can’t ever fix this for my past self, but I know I can offer insight to the people who need it.
Your doctors might not know everything.
Your family might not be as understanding as you’d like.
You feel like life is passing you by while you’re stuck in a body or a mind (or both!) that never seems to work the way it should.
You must advocate for yourself. You must push back when you know that your doctor, telling you that bleeding for three weeks at a time is just “your new normal,” is wrong. Or, at the very least, overlooking or dismissing some important symptoms.
And I say this as a privileged white woman. This lack of care from doctors is worse for Black women, whose lives literally hang in the balance. “Black women are more than 3 times more likely to have a maternal death than white women in the United States,” according to a review presented at the American Diabetes Association’s 80th Scientific Sessions.
Don’t quiet your own inner voice when things just don’t add up.
For the record, I started seeing an acupuncturist to work with my cycle, and after six months of weekly appointments, my period is back on track.
My hormones are back in balance and my sex drive is coming back.
And I’m 37. At least the next few decades will come with the understanding that I’m not weird — I’m perfectly fine. And just a little different.