Today I Won a Battle

There is a thing that can happen when you’re chronically ill.

There’s a moment when you just start ignoring your sickness. Because you’ve been told to ignore it so many times. Because you’ve been told you have to pray and ask Jesus why you go to the doctor so much, since it must be a psychological need you’re filling and not a real condition. Because you’ve been taunted for being a hypochondriac. Because, so many times, doctors and family and people you thought were your friends gaslight you and say there’s nothing wrong. And you’re so, so tired of nobody believing you, that you don’t believe you either.

You tell yourself you’re being precious and that it will go away on its own.

You find techniques to dissociate. You seek little places in your mind where the pain or the nausea or the fatigue isn’t. You live there. And when you feel a flare coming on, you go into a trance. And it almost works– until it doesn’t. One of my chronic conditions is…. something the matter with my bowels. For a long time I had no diagnosis at all. Then I was diagnosed with severe irritable bowel syndrome.

Then, by trial and error because I’ve never passed a blood test for Celiac’s disease, I found that staying scrupulously gluten free for long enough made the agonizing intestinal spasms go away completely. I’m assumed to have non celiac gluten sensitivity now. But for several decades of my life, I would double over with sudden, unexplained, crippling bowel pain every so often for no reason. Nothing made it go away. No medication made the cramping stop. It just happened– at a birthday party. While swimming. At Mass. While on a car trip with the next exit several minutes away. This was just one, extremely inconvenient, piece of my medical puzzle: that and the migraines, the anxiety and OCD, the weight gain, the chronic fatigue, the juvenile rheumatoid arthritis that made me limp when I was three years old and then went away mysteriously before Kindergarten. And people didn’t believe me.

Some people did believe me, to be fair, but others didn’t. I got called a hypochondriac. Worst of all, I was called a drama queen, doing it for attention. That stung.

I started learning to live with the bowel pain without complaining: always keeping a plan of where the bathrooms were in a building so I could slip out. Spending a lot of time in bed, curled up like a shrimp with a pillow stuffed into the crampiest part of my abdomen, telling myself stories and praying. Bowel pain was just a part of life, one I tuned out as often as possible. I reminded myself that people wouldn’t believe me and would make fun of me if I didn’t ignore it. This is why, one night about seventeen years ago, I ignored agonizing lower abdominal pain on the right side, that side you’re never supposed to ignore. I ignored it as I finished my studying for the day. I tried to ease it with a bath in the dormitory tub when I couldn’t ignore it anymore. I curled up in the dorm bed and stuffed a pillow into the lower right quadrant, reminding myself over and over that it was not really anything to worry about; I was just being a hypochondriac and a drama queen. I tried to dissociate. I dissociated for about ten hours. Finally, just before dawn, I couldn’t dissociate anymore.

When I woke up from the anesthesia later that day, the first thing I did was cry, not in pain but in terror. “Was it really appendicitis? Did I really have appendicitis? I’m just so afraid I was faking for attention!”

The nurse was baffled. This was, apparently, not a normal thing to cry when waking up from emergency surgery for a ruptured appendix. But it was a normal thing for me to think.

Six months later, when the volvulus happened and my illeum started to die, I gaslit myself again. I took Gas-X and stayed in bed for a day and a half, telling myself it would go away in time. Then I went to the emergency room and they gaslit me, because I’d already had my appendix out and it sounded like a case for my family doctor. I tried to sob that the pain was unbearable, but the gruff ER doctor didn’t listen. That’s still a very traumatic memory. Eventually the pain and vomiting got so severe that the next doctor on shift admitted me for observation, but it was days before I got a diagnosis– a dire one, explained to me while they readied an operating room and a nurse crammed a plastic tube up my nose. When I woke up from that surgery, I found I’d had eight inches of dead gut cut out and a thick gash from my pelvis to my breastbone. The surgeon had no idea why I wasn’t dead.

Last Thursday, I came down with something. I had terrible nausea and also the runs– back and forth to the toilet every two hours, mild cramps, terrible exhaustion, constant thirst. The fever went away after the first day, but the runs and the cramping didn’t. The fatigue didn’t. Over-the-counter remedies didn’t touch it. I nibbled bananas and drank electrolytes, but it didn’t go away.

I kept telling myself I’d be better in a day or two and I should stop being a baby, but that didn’t work.

I finally turned myself in to the emergency room on Tuesday afternoon.

I was going to go to the urgent care clinic, but I was so dizzy that the long drive didn’t feel safe.

The wave of emotion hit me when the smell of the triage room did. They crashed at the same time: the scent of antiseptic and the shudder of fear. The cold of the nurse’s forehead thermometer and the cold of my shame. I felt that I was being a baby, and no one would believe me because I was making it up.  But I also felt as though I might be dying, and maybe this time my number was up. Maybe this is the time no one would believe me until it was too late.

Those were the two snakes that kept twisting in my chest as I waited for the doctor: the one who thought I was faking for attention and ought to suppress it harder. And the one who thought this was dead serious, but no one would believe me, and I’d die.

The doctor heard “volvulus” and decided to run a CAT scan, in addition to all my blood tests, just in case. He palpated my scarred and swollen belly, and I tried not to shudder visibly.

The nurse who took the blood and put in the IV was friendly, but I felt as though she was interrogating me for my trial.

The people in the scan room were very pleasant. I didn’t have to drink a bottle of contrast; they put it straight into my IV, which burned nastily for a minute and then made my body feel warm. I obeyed the computerized voice ordering me to hold my breath and let it out. I stared up at the beige plastic arc as if it was a six-winged and many-eyed seraph hovering between me and Paradise. Please, let them find something. Don’t let them tell me I’m making it up. 

And I wasn’t making it up.

My blood work was normal, but the CAT scan found colitis– not ulcerative colitis, as far as we know, which is a chronic illness; just plain old colitis, swelling of the colon. My large intestine is swelling up in one place. That’s what’s causing the sickness. I’ll be on antibiotics for a few days, and follow up with a GI if that doesn’t clear it up.

I don’t know if the big smile I gave the doctor alarmed him. It’s probably not the way he’s used to seeing people react, when they’re told they need antibiotics. But I was so happy. I’d convinced myself to ask for help, asked for help, and gotten help, all in the same day, without a catastrophe.

That’s a little battle I won today.

I am feeling better already.