Why Chronic Pain and Chronic Illness are Dangerous

As someone with fibromyalgia, pain is my normal. What one person would rate a pain level four barely registers on my radar. Four is my everyday starting point. I wake up in pain, I work in pain, I play in pain, I exist with pain. A good day is a four. A GREAT day is a three. During a flare-up, my pain is anywhere from a six to a ten. Sometimes it’s completely off the 1–10 pain chart.

Yes, fibromyalgia is so much more than physical pain, and the symptoms seem to be endless, but what I want to talk about today is the pain, because chronic pain is dangerous.

For the past year, I’ve been experiencing pain attacks in my stomach and back that are excruciating. When I say excruciating, I mean unable to walk, unable to talk, unable to do anything but rock back and forth and wait. I consulted my doctor, and he said it’s probably acid reflux or indigestion. He prescribed acid reducers and told me to try them. I tried them and for a month, I had very little pain. I thought they were working.

One night, I went to my sister- and brother-in-law's house for dinner. We eat, we drink, we play games, everything is great. I get home and the familiar uncomfortable feeling starts creeping into my abdomen. “Oh no,” I think, “here we go again.”

I get pillows set up on the couch because I won’t be able to lay down. I get the acid reducers, Tums, and Pepto, and fill my water bottle. It’s going to be a long night. I think about going to the hospital, but as COVID cases were on the rise at the time, I figured it better to treat it at home and call my doctor in the morning.

My doctor asks what I ate. I tell him — pasta, sausage, meatballs, Italian food. “I saw my in-laws,” I joke, “that’s what we do.” He says I probably overdid it on the acidic foods and now I’m paying for it. He tells me to keep taking the acid reducers and to avoid acidic foods, so I do.

A month passes and everything seems fine. Then, randomly, after eating a healthy dinner of grilled chicken and veggies, the feeling returns. Fuck. I’m pissed. This is the third time in as many months. I suffer through it all night. In the morning, I have toast for breakfast and I’m fine.

Two months pass. Nothing beyond my usual pain, which goes up and down from a four to a six depending on the day. It’s been months, and the holidays are coming. Meanwhile, I’ve been feeling really lethargic, fatigued deeper than I’ve ever felt before. My bowel movements have changed and continue to change daily. I’m more nauseated than usual and food has stopped being appetizing. Then, another pain attack. I’ve started calling them “acid attacks” because my doctor thinks it’s acid, and I’m inclined to agree with him. Google has led me down so many lanes, that this one seems plausible.

At this point, I’m too tired to move. I stick it out through the night on the couch and then get in touch with my doctor. I word-vomit everything into an email and send it to his secretary. She calls me an hour later and tells me my doctor wants to see me in person. “Okay,” I think, “we’re going to get answers.” It’s been pandemic-style phone call appointments thus far and going in person may help.

I sit with my doctor and tell him everything. He asks me about my diet, my symptoms, the pain. He tells me he wants me to see a gastroenterologist, but given the pandemic’s impact on the healthcare system, the wait will be long. He gives me a referral to a private GI and tells me to ask my insurance if they’ll cover it. In the meantime, he sends me for a barium swallow test, which comes back showing no issues, and tests me for H.pylori (the bacteria that causes most ulcers), and I test negative.

He reminds me that stomach issues are common in fibromyalgia patients and suggests a bunch of diet changes to see if I have any food allergies/intolerances. I start working with a dietician who practically bends over backward to try to figure this out.

I get through the holidays with near-constant stomach discomfort. Not pain in the sharp, stabbing sense, but there’s a rock in my chest, my stomach is upset, and I feel… blah. I start thinking to myself — am I overreacting? Is the pain really this bad, or is my brain blowing it out of proportion because as a fibromyalgia patient, I perceive pain differently?

I should also mention here that during this entire ordeal, I’m writing my master’s thesis and preparing to defend my degree. Some nights I get three hours of sleep. Some nights I manage six or seven. I’m on a deadline. I need to graduate so I can get my Ph.D. applications in. I blame stress for a lot of my symptoms.

I submit my GI referral to my insurance and wait. And wait. And wait. Finally, they tell me that they’ll cover the tests but not the doctor’s visits, so there’d be $900 I’d have to pay. I’m a graduate student. Paying $900 for healthcare in Canada seems absolutely bonkers to me, so I ask my doctor to refer me to a non-private GI.

It’s now been a year. A year of excruciating pain, of uncertainty, of treatments and diets that fix one symptom, but don’t help the others. I’m exhausted. I submit the GI referral to one hospital and get declined because I’ve seen a GI at a different hospital before. I call the hospital I’ve seen a GI at. My referral says non-urgent, so they put me on a waitlist. They’ll call me.

A month goes by. I graduate, hurray! I celebrate with friends and family, I eat the celebration foods, and drink the celebration drinks. Days go by and everything seems fine. Then, that familiar discomfort comes back. I know I’m in for a night of pain, but this time it’s sharper than it’s ever been. I berate myself for eating all the party foods and drinking so much red wine. I blame myself for being sick, for being in pain. I rock back and forth, tears streaming down my face. I look at my boyfriend and ask, “What did I ever do to deserve this?”

I make it through the night, and the next day I do what I’ve always done after an “acid attack.” I eat lightly, drink more water, relax, and read. It doesn’t matter. The pain comes back that night, and all I can do is sit and rock back and forth and wait for it to end. The acid reducers do nothing. The next morning, after having fallen asleep at 4 AM, I decide that I won’t eat any solid food that day and see what happens.

I make it through smoothie day although I’m starving. I’ve slowly been reducing my food intake over the past week because eating hurts. My boyfriend and my dad (who is still in town since coming to visit for my graduation) ask if I want to play Catan. I agree if only to have something to help take my mind off of the pain.

Halfway through the game, I’m done. I’m bitchy and snarky every time someone cuts off my road. I’m beyond hangry. I’m in pain, I want to stuff my face, and I HAVE food in the cupboard, but I know it’ll hurt me. I decide that’s it — I’m not waiting on my family doctor anymore. I’m going to the emergency room when I wake up and I’m going to wait it out.

I get to the ER around 1 PM. At 10 PM, I still haven’t seen a doctor. I’ve had nothing to eat or drink since the smoothies I had the previous day. The nurse tells me not to drink water until they do a scan, but I can’t wait anymore. I want to go home to bed. My back is killing me, I have a migraine, and I’m exhausted. My boyfriend comes to get me, and I leave. I come home, have a single piece of toast and some water, and go to bed.

Two days later I’m back in the ER waiting room, doubled over in pain, waiting to see a doctor. It takes six hours, but finally, the doctor calls me. I tell him about the pain, about the fibromyalgia. He pokes at my stomach, making the pain worse, then does a portable ultrasound. My blood tests come back normal. He says that he doesn’t see anything with the portable ultrasound machine, but that it’s not as accurate as the real machine. He schedules me for an ultrasound and an endoscopy. It is June 24th, and my appointments will be on July 6th and 7th. He says I may have a small ulcer, or gastritis and gives me acid reducers and oxycodone.

Great, let’s give the woman with chronic pain opioids and tell her to take them whenever she has pain. I’m finally able to get some sleep with the painkillers, but the pain is still there every time I eat. The drugs just mask it.

On July 5th I go for my COVID test and get a negative result. Apparently, this is necessary to have an endoscopy. On July 6th I have my ultrasound and the tech looks concerned. She calls someone else in to look. That tech moves the wand around my stomach and suddenly says, “Oh!” Alright, not exactly what you want to hear when someone is looking at your insides, but hey.

The tech says, “You have a gallstone stuck in your gallbladder.” I ask what that means. The tech says “Oh, you’ll need to talk to the doctor.” I tell them I have an endoscopy scheduled at the hospital the next day, and they tell me to bring my form with me to show the doctor before the test.

The next day I show up at the ER for my appointment and they take me in the back and get me settled on a stretcher. An hour later the ER doctor comes by and says with wide eyes, “I don’t think we’re going to send you for an endoscopy today. You have a gallstone blockage in your gallbladder. It needs to come out.” I ask him to clarify that he means the stone needs to come out. “No,” he says, “the entire gallbladder.” I look at him in shock. Based on my Google sessions, I had deduced this myself, but it was still a worst-case scenario in my mind. I take a breath and look at him. “I came in here for a test and you’re telling me I need an organ removed.”

He sighs with a kindness I’ve never heard in a sigh before and grabs a pad of paper. He draws a diagram and starts explaining what is happening inside of me. I tell him the whole one-year-plus saga of my stomach issues and pain and his eyes widen even more. I ask if this could be the cause and he nods. “Probably,” he says. He asks me over and over if I’ve had a fever, seemingly shocked when I say no. He has the nurse take my temperature under the tongue and then rectally. He runs blood tests and has an IV put in to hydrate me. He tells me he spoke with the surgeon and is doing his best to have someone visit me as soon as possible.

I appreciate his kindness, but I came to the hospital for a test, and now I’ve been laying there for hours. Two more hours pass, and he comes back. The surgeon can’t see me today, but he explains all of the warning signs I’m to look for, telling me to come back to the ER immediately if I start a fever, or begin to vomit. He prescribes me morphine and tells me to try to eat when I can because I’m not consuming enough calories. I’ve lost almost 8 pounds in two weeks. He gives me a number to call and tells me to make an appointment with the surgeon ASAP.

The next morning, I call the hospital and they give me an 8:30 AM appointment with the surgeon. That was today. He explained the procedure to me and is working to fast-track me for surgery as soon as possible.

When I told him that this has been happening for a year, he was in shock. He was compassionate and low-key dropped hints that I shouldn’t wait any longer, that I should stop taking the morphine and oxycodone, and that if I have another pain attack and Tylenol doesn’t help, I should get back to the ER immediately.

I spent more than a year in off-and-on agonizing pain, with a doctor and a nutritionist trying to find out why I was having these symptoms, treating me the way they knew how. I was seeing a doctor so I thought I was doing the right thing. All of my symptoms are so closely tied to the symptoms of fibromyalgia and are so interconnected with chronic pain that I have been living for an entire year with a gallstone blockage in my gallbladder.

The dangers of this if gone untreated for too long? Infection. Sepsis. Damage to other internal organs. Death.

I convinced myself that I was overreacting. That fibromyalgia made me experience pain differently. That my diet was to blame. I became so used to constant pain in my life, that one more pain was just par for the course. This is why chronic pain and chronic illnesses are dangerous. We are so used to hurting that we stop questioning the pain.

Both ER doctors sent me home with opioids. They were doing their job and trying to ease my suffering. But both of those doctors gave me, someone who lives with pain every single day, highly addictive opioid medications with the instructions to take them every X hours if I have pain. Our society is currently going through an opioid addiction crisis. I am able to take these medications as prescribed, but what if I wasn’t? What if I took them because they help mask the pain? What if I started taking them and then couldn’t stop? What if I would do anything to stop the pain? This is why chronic pain and chronic illnesses are dangerous.

So what can you, a non-chronically ill person, do? Check up on your chronically ill friends, family, and co-workers. Ask them how they’re doing, and actually want to know. Ask them about their medication intake.

Because us? We’re going to tell you we’re fine. We’re going to say it’s the same shit, different day. Why? Because we’re sick of being a burden. We feel like a burden to everyone around us, and we feel like a burden to ourselves. We’re tired. We’re so fed up that we tell ourselves we’re overreacting to the pain when we actually need an organ removed.

Peace and love, friends.