Our writers share the reality of living with chronic illness. Spoiler alert: It's different for everyone. 

Health: Chronic Sickness

“She’s got the lungs of a cystic fibrosis patient,” said the doctor. He had come to see me following the bronchoscopy, holding his phone so I could scan the photos as he scrolled, revealing different angles of my daughter’s mucus-filled lungs.

“Even her vocal cords are clogged,” he added. “That’s one strong kid. I don’t know how she’s still functioning with that mess in there.”

“She’s been to an ear, nose and throat specialist already. Should we try again?”

“It couldn’t hurt,” he said. “Maybe someone should take another look at those cords.”

What light there was went out of his eyes. We’d had this discussion before, and bringing it up again risked losing the limp remains of goodwill between us. He picked up what seemed to be the chorus of our little play: 

It doesn’t matter why her lungs are the way they are because the treatment would be the same anyhow

. This made no sense to me, but it had become an effective silencer.

“I know it’s tough,” he said. “I wouldn’t be you for anything.”

My Daughter's Health Began to Quickly Deteriorate

My husband and I have three children. Each was given the sweat test for abnormally high chloride levels, an indicator of CF. All passed, meaning they most likely didn’t have the disease. In 2012, we learned for certain that my husband, whose half-sister died 30 years ago from CF, carries the most common cystic fibrosis transmembrane conductance regulator (CFTR) mutation: deltaF508. But we weren’t planning for more children, so our main concern was having our kids screened for the mutation before they had little ones of their own.

Since the age of 4, our youngest has had a chronic cough. Over the years, she’s been diagnosed by a variety of specialists with asthma (for decreased lung function, chronic cold and cough); rhinitis (when lung function improved but the cough persisted); Tourette syndrome and comorbid obsessive-compulsive disorder (when she couldn’t stop coughing and pounding her chest until she was boxing-ring bruised); and “really bad” asthma (for the pneumonia and whooping cough that kept her ill for months). By age 13, her health began to decline at a terrifying pace.

My husband and I read relevant research papers and discovered there are approximately 2,000 known CFTR mutations, and some of them quite rare. On multiple occasions, we asked the doctor to do genetic testing. He insisted that, having passed the sweat test, our daughter couldn’t possibly have CF.

We Needed to Find a Cystic Fibrosis Specialist

One day, in front of my daughter, the doctor told me he believed her cough was psychological in origin and that if she didn’t start gaining weight, he would refer her to an eating disorder clinic. “You’re an anxious mother," he added, "and I think you make her tense.” When she was nearing her 18th birthday, we parted ways with the doctor. It was time for an adult specialist.

The new doctor was kind and well-mannered. His nails were buffed and he wore a crisp suit. He had my daughter’s latest chest X-ray ready to go on our first meeting, and he spoke to her as though she was worthy of his time and attention. He told us the diagnosis was bronchiectasis—meaning fibrosis, or scarring of the lungs—of unknown origin. His next youngest, similar patient was 65 years old.

I asked if the scarring could be reversed. There were a few moments of silence. Eventually, the doctor shook his head. “I’m afraid not, though I suppose anything’s possible.” He had come out of paternity leave to see us. He retreated again, though we didn’t know it until I called his receptionist in a panic.

“The doctor will be back in a few weeks,” she said. “He can see you then.”

“Are you kidding me?” I used a phrase normally reserved for minor altercations with family members. “But she needs antibiotics every few weeks. She spends more time in bed some days than out of it.”

The receptionist didn’t sound surprised. “I’ll get in touch with him right away," she said. "Call me back if you don’t hear from him soon.” What we didn’t yet know was that this doctor was troubled by the case and had been consulting a CF specialist. My daughter consumed another course of antibiotics, eventually landing on her feet again. A phone call came out of the blue. The CF specialist wanted to see us.

Within minutes of meeting with the CF specialist for the first time, I began to relax. He was knowledgeable and affable. I tried to tell the story, to get the details right about what my daughter had been through for years. He listened, nodding now and again. Then he comforted me. “You’re not alone anymore," he said. "I’ve got this.”

I sobbed with relief. My daughter rolled her eyes.

My Daughter Finally Received the Diagnosis We Had Feared and Expected

He was prepared that first day to do genetic testing. Blood was drawn. When the results came back a few weeks later, he gave them over speakerphone so we wouldn’t have to wait longer than necessary. Our daughter had heterozygous cystic fibrosis, with one of her mutations being extremely rare. Few people in the world have her type of CF, but it can be revealed through what has become routine genetic testing.

Cystic fibrosis is one of the most common and fatal genetic diseases in the world. Though we were grateful to know the truth and to have a compassionate, competent care team in place, we knew a cure wasn’t around the corner. There are miracle drugs in existence, but they cost hundreds of thousands of dollars per year, and Trikafta, the queen of them all, had yet to be approved by Health Canada.

We set aside a countertop in our home for our daughter’s daily therapies. (Aspirational plans for a zero-waste household were now a bitter joke.) Stacks of Kleenex boxes maintained company with the throwaway wheatgrass bowls for collecting coughed-up mucus. A compressor and nebulizer system aerosolized the various medicines that lubricate the lungs and give our daughter a decent chance of bringing up the viscous goo. We purchased breathing exercise devices and a massage machine to give us a break from drumming on her back.

My daughter gained weight. She found articles on the future of gene editing. Together we watched the silliest episodes of 

 on YouTube to pass the time. One day, she no longer wanted my company. She researched therapies that could be done independently.

I contacted our local representative, the premier and the minister of health by telephone and by mail. I was polite, and so were they. The cost of rare-disease drugs is high. But so is the price of hospital stays and antibiotics and therapies and other medications. And the medical research itself. Though the value of a human life is incalculable, I was compelled to communicate why CF patients like my daughter should be saved. It was hard not to feel as though I was begging for her life.

Thanks to the Canadian Government's Funding, We Have Hope

Then, a miracle happened. At 3:07 p.m. on Friday, September 24, 2021, we received an email from Cystic Fibrosis Canada. Saskatchewan, Alberta and Ontario—three provinces with fiscally conservative governments—announced they would publicly fund Trikafta. A large percentage of the CF population of Canada was gifted with enhanced health and extended life overnight. Quebec soon followed, as did British Columbia. Eventually, the rest of the nation joined in.

One day, our first doctor called to apologize. “I’ve learned my lesson,” he said. “You can never ignore a chronic cough. And genetic testing shouldn’t be resisted.” I suspect, though I will never know for sure, that someone reprimanded him for the years that could have been spent preventing more scarring of my daughter’s lungs.

I fought the urge to reply, “No shit, Sherlock.”

Instead, I offered understanding, ending the conversation with a simple, “Thank you for calling. But we’ve got this now.”

The journey to find the right doctor was almost as bad as my daughter’s fatal disease diagnosis.

What It's Like to Live With My Daughter's Cystic Fibrosis 

In the chaotic run-up to Christmas, when holiday, work, family, food and obligations collided with a pandemic, I started getting urinary tract infection symptoms. You basically want to go pee all the time. There’s no relief. It’s constant discomfort.

But it’s no big deal, I thought. Nothing that some antibiotics can’t sort out.

The first cycle of drugs didn’t work—it happens—but neither did the second. The doctors ordered some tests, which gave no clue as to why I had those symptoms. And oddly, the more my bodily fluids tested negative for infections, diseases and cancers, the more worried I got.

There were many calls to the doctors, all of which I had to initiate. One theorized I had something called interstitial cystitis. I wasn’t too worried when I heard this. I figured it was just another type of cystitis that would just need different drugs.

It wasn’t until a few days later when I casually Googled the condition that my heart sank, my chest began to hurt and panic set in. “No treatment,” I read. “Learn to manage the pain…symptoms worsen…etc.” Merry fucking Christmas.

Despite a host of bad days, the Christmas period was wonderfully distracting, but the biggest comedown of all soon came. January cooled the warmth of the holiday season that had enveloped me and made me think things might just be alright.

You’d think my doctors would check in on me, as they had just diagnosed me with a potentially lifelong, chronic, painful and incurable condition, but I didn’t hear from them. I started finding my own road map out of this unfolding nightmare and looked for practitioners that may have successfully worked with this condition.

I started working with a nutritionist, which led me to a pelvic physiotherapist and that led to an expert urogynecologist, all of which culminated in expensive visits, supplements and tests. Thank god for credit cards.

The cost of healing, or even just embarking on that hopeful road towards it, is high, even in a country with free national health care. But health care systems are no good when your symptoms deviate from the textbooks—doctors want to follow protocol and tick boxes. They’ll cram you into a mold. Sometimes, they cram you so hard into that mold that they say things like, “But you’re fine! There’s nothing wrong with you. Go enjoy life!”

Being listened to is priceless. Sometimes, you need to pay just to get someone to hear you say, “I don’t know what’s wrong with me, but this isn’t OK. I’m not OK.” You have to burst out of that mold to have a chance at getting better. You have to find that doctor that listens when you say, “Look I know this sounds crazy, but…” without trying to explain it away.

But empathetic medicine costs money. I’m lucky enough that I have savings and a credit card to get myself better. Countless people suffering from chronic conditions—or worse—do not.

The most rewarding aspect of this experience is actually the loss of that unanswerable question, “Why me?” In the early days, when emotions were at their most concentrated and the question crept up, it was quickly replaced by, “Well, why the hell not me?”

Bad shit can’t always happen to other people. And in some ways, I love that because it means that I am human beyond doubt. It made me realize that life isn’t fair and isn’t up to fate or the stars. It’s up to circumstance, causality and chaos—and me.

Chronic Pain Has Left Me Feeling Isolated and Frustrated

The loneliness of having an uncommon condition is something I was not prepared for. (I mean, who the hell is?) Sure, I regularly had the company of a medical practitioner to talk about my issues with. And then there are all the times I’ve explained what was happening in my body to my friends—like why I can’t eat certain food and can only drink water. (That’s right, no booze, no coffee!) But once everyone knows what’s going on with you and the appointments become less frequent, it’s just you and your symptoms. You get tired of telling people about it; you get bored of telling your partner about it because frankly, being “the sick one” is a fucking bummer. So after a while, it’s just you. And you walk around looking longingly at people, thinking, “Have you got what I have?” But unless you join online forums (a minefield of worst-case scenarios), you’re bumping into the corners of your new life alone.

Even on good days, I feel it in my pores that something’s not right. The clench of my jaw, the subtle tensing of my muscles. But on the outside, it’s actually not that visible. Day to day, nobody can see that there’s anything wrong with me, nobody can see that there’s this thing that I think about every single second of the day, that dismantles me so easily.

The assumption is, if you’re not talking about it, writhing in pain or looking particularly uncomfortable, then you’re fine. But after a while, after the shock and anger wane and you’re left to get on with it, you also become bored with yourself and your complaints. So you stop talking about it, and people assume you’re OK because you look fine.

That’s understandable, but I need people to know I’m not OK, and I’m not as symptom-free as I seem. They need to know for their own sake because I’m not 100 percent there anymore. A part of me has gone, and I don’t know where it went or when it will come back.

I’m still on the road map to healing, and I have no idea how long I’ve got left until I get to my destination—especially when the diagnoses continue to change. But there is patience and love and a few good (expensive) professionals who can get me there.

My constant pain has confused my doctors and left me feeling isolated.

Living With a Chronic Health Condition Is Lonely

The first thing I remember was waking up and hearing people talking. It was around 1 a.m., and I was confused why I was on the floor next to the bed. Firefighters, paramedics and my wife explained I had a seizure. “How come no one told me?” I asked. Someone would've told me this was going to happen, I thought. Since then, I've learned it's common to be disoriented after regaining consciousness from a full-blown or grand mal seizure.

That was my first seizure, 11 years ago. Off I went to the emergency department (ED), where a neurologist came to my bedside, loaded my IV bag with an anti-seizure drug to stabilize me and made an appointment to see her later that afternoon. It was daylight now, and I went home, badly needing sleep.

I woke up later, saw wood paneling and realized I wasn't at home. I looked around, saw a paramedic and realized I was in an ambulance. Less than 12 hours later, I’d had a second seizure. At this point, I was told I was going to be admitted for observation. As usual, in a hospital, everything takes a long time.

It would take a few hours to get a hospital room. I waited in a hospital bed in the ED, and occasionally a volunteer would come by and chat with me. I hadn't had lunch and convinced him to get me some food. The last thing I remembered was eating applesauce. I came to and was told I had another seizure. This was troubling, as I went from seizure-free to multiple seizures in one day.

I Had Experienced Traumatic Brain Injuries

My type of seizures are referred to as “grand mal” but are now known as “tonic-clonic.” I've been told that with each of my seizures, I have convulsions for a minute or two, followed by being unconscious for about five minutes or more, only to awake in a very groggy state. I get confused about not knowing what I was doing last before I lose consciousness.

I woke up the next day in the hospital and had an MRI that showed scarring on my brain. The neurologist figured it happened eight years ago when I flipped my mountain bike, cracked my bike helmet and was knocked unconscious. She said I had a traumatic brain injury. That wasn't the only head injury I've had. Add to that my head smashing into a windshield, another bike accident and whatever else I've forgotten. I was told I couldn't afford to have any more blows to my head.

A few days later, I met with the neurologist and was prescribed Lamotrigine pills to prevent seizures. This medication is used to help control epilepsy but also used to treat bipolar people, which I'm not. This all seemed overblown. I was told I'd probably have to take the pills for life. That didn't sit well with me. It was determined what most likely caused my seizures was an antibiotic, which I had been on for a week. Antibiotics are notorious for lowering seizure thresholds and making it more likely to have seizures.

I hadn’t had a history of seizures—this was a one-time thing. Since I ended the antibiotic, a seizure wasn't going to happen again. I told the doctor I wanted to get off the pills. She told me I could choose not take it, but there was the chance I could “seize again.” My brain had changed, and I felt betrayed by my body. The previous day was normal, and after a week of taking a medication that was supposed to heal an infection, I ended up like this. I was in denial of what was to be my new normal, but I also discovered there was some humor in it.

I’m Trying to Find the Humor of My Seizures

About a week after my seizures, my wife and I went to thank the paramedics for helping us. We took small stuffed animals for them to give out to children they may have to transport to the hospital. One of the paramedics came out of the firehouse and said, “I didn't recognize you with your clothes on.” This was my first big laugh about anything related to my epilepsy. Firefighters and paramedics who are called out to medical emergencies see plenty of nudity. So while it can be embarrassing for some of us who receive the help, it's just another day, another ass, another tit, another penis to them.

At first, it's hard to find anything funny about epilepsy. Some things are hard to laugh at. One of the hardest things about having seizures that leave a person unconscious is a law that orders doctors to notify the Department of Motor Vehicles. This resulted in me losing my driver's license. Compared to dying, it's not the worst thing, but it's pretty tough.

The freedom a car gave me in doing something as simple as making a grocery store run, dog walking or seeing a concert at night was all gone. As my wife said, not having my license made my world smaller and less social. There was the public bus that I used, but that only goes so far.

Since then, I've had several more seizures. I've gotten my license back (which requires an interview, plus a written and driving test each time), only to lose it again and again. It's a trying experience, and each time, I'm unsure if I am going to go through it all again. Each time, my neurologist completes the DMV's paperwork telling them it's safe for me to drive, and each time, I have to go through the long and tiring process. I've even had them reject my application because there wasn't enough of a “seizure-free” period, even though they sent my neurologist the paperwork.

Having a seizure is somewhat similar to blacking out from drinking. However, with seizures, instead of having parts of the previous night missing, I have trouble remembering a few days, often with no memory of what I’ve said or done.

One of my funny seizure stories I like to tell horrifies some people. It took place on the edge of the Grand Canyon, and although I was several feet away from the edge, I'd like to think I'd be up on the leaderboard for one of the more interesting places to have a seizure. It's not that falling to my death would be funny, but rather, it’s where I had the seizure. “This place really shook me up,” I’d say. The Grand Canyon marked the first time an antibiotic wasn't involved in my seizures—lack of sleep was suspected, a trigger for some with epilepsy.

Another time, I was at a hospital being walked into the ED by a nurse when I started to have a seizure and dropped. Fortunately, the nurse caught me and kept me from smashing my head against the tile floor. Again, I had no memory that this happened.

Many Questions Still Haunt Me About How Others Will Respond to My Seizures

Some unsettling thoughts about having seizures come up once in a while. Will I crack my head and get further brain damage? Will a well-meaning bystander try holding me and cause spinal damage? Will they put something in my mouth and choke me, or will a seizure itself kill me? Then there are the disturbing stories of people with epilepsy having a seizure and police mistaking them for a person on street drugs. Both types of people could be sleeping, sleepy or confused.

Restraining a person after a seizure could result in them trying to struggle free. They wouldn't comprehend the order to remain still. News stories document police using excessive force on those who've had a seizure and them being beaten, tased or shot. There are seizure awareness courses for law enforcement that should be mandatory. It might give people with epilepsy peace of mind.

I don't remember falling out of bed, I don't remember collapsing at the Grand Canyon and I don't remember a nurse catching me in the emergency department. I'm certain I'll have another seizure but uncertain if it will be caused by antibiotics, exhaustion or something else. Will I be with someone who can tell strangers I'm having a seizure and protect me? It's all part of my life's great mystery.

I never know when my next seizure will occur or how people will react around me when one happens.