illness

As the coronavirus pandemic wears on, stories have emerged of survivors who continue to suffer chronic illness weeks and even months after recovering.

As anyone living with ongoing symptoms can attest, the challenge is never strictly physical. Being sick often carries a psychological toll, fueling stress, anxiety, and isolation.

Having myself suffered a gut disorder since my early teens, I know firsthand the restrictive – if not crippling – effect ongoing health problems can have.

What these experiences ultimately taught me however is that even when overcoming illness might seem impossible, fighting your own definition of “betterness” certainly isn’t.

An ailment unknown

From the age of 12, my stomach became permanently bloated and tender, my digestion troubled.

After a family dinner, I’d usually wind up locked inside the bathroom as my gut purged itself. Sometimes the voices of my siblings would drift out of the kitchen, and I’d hear their complaints that I was deliberately shirking post-meal cleanup. How little they knew.

Stabbing pains came and went often at random. One moment I’d be sitting at my computer, and the next I’d be stricken, doubled over, or collapsed on the floor.

These spells of agony sometimes lasted for days. During a family cruise vacation, I was afflicted by fluctuating blood sugar levels, and caught myself returning to the buffet repeatedly, wolfing down one dish after another.

Then, halfway into the trip, my digestive tract gave out. For three days I lay in the fetus position in our windowless cabin in a cocoon of darkness split by red lightning-strikes of agony.

“It’s just the stomach flu,” my mother said when I asked to be taken to the onboard doctor.

“Mum, something’s really wrong,” I insisted. “My body isn’t digesting anything.”

“They’re going to charge me $100 and all they’ll do is give you an aspirin,” she complained. “Just rest. It’ll pass.”

But 72 hours later, the symptoms had failed to ease. The constant pain and nausea had robbed me of my appetite, and after three days of fasting, my mother’s seeming indifference turned to concern.

She thrust plates of salad in my face, insisted on feeding me forkfuls despite my protests.

Days later, back on solid ground and mostly recovered, I looked back on the hellish episode as a freak incident. But chronic illness persisted.

Sticking with self-diagnosis

For the next decade, the same symptoms came and went with the suddenness and ferocity of summer thunderstorms. Their cause, at first a mystery, was eventually identified as wheat.

The symptoms after all were on par with those of Coeliac disease. And when I indeed subtracted wheat products from my diet, the symptoms eased to the point of being manageable.

My doctor suggested I get an endoscopy so I could be formally diagnosed. She explained that in order to avoid a false negative, I would need to start eating wheat again.

Having already tasted freedom, I had no intention of going back into dietary bondage. Besides, what would the test prove, other than what I already knew for a fact?

My resistance to getting tested was in part due to my parents once dismissing my symptoms as psychosomatic. 

My antique distrust of authority figures, and the fact I alone had championed my own health, left me somewhat resistant to the doctor’s suggestion. 

It was I, after, all who had determinedly spent three hours Googling symptoms; I who had found the name for my chronic illness. 

It followed, therefore, that only I could determine what was best for my own health. 

“You have no way of knowing for certain,” the doctor said when I declined the offer of an endoscopy. “It could be Coeliac disease. Or it could be something else entirely.”

“I’m good,” I said. “Thank you.”

“Well, it’s your health,” she replied with a shake of the head.

“It is,” I snapped back. Just who did this woman think she was to question my judgment like this? A qualified medical professional?

No one and nothing was going to dissuade me. Defiant, I marched out of the doctor’s office, clutching my self-diagnosis to me with the kind of protectiveness reserved for a newborn.

The struggles of identifying chronic illness

Still, I never achieved complete symptom clearance. All it took was a handful of nuts or a glass of milk to kick off a round of wind and intestinal purging, while beans had the opposite effect, bringing digestion crashing to a halt.

A dietician suggested that maybe I was eating too much fiber. She proposed I try cutting back on certain trigger short-chain carbohydrates like lactose and fructose, known by the acronym “FODMAPs”. 

But by the following week, I was embarking on a month’s long trip overseas, and soon forgot the dietician’s proposal.

Later, believing I must be suffering some kind of allergy, I attended a leading clinic. If I was hoping to come away with a diagnosis, I was instead left only with a patch of irritation on my left forearm, something akin to a mosquito bite.

The allergen prick test revealed I was reactive to American dust mites, but not wheat and diary.

The clinic recommended nevertheless I switch to a diet low in certain naturally occurring food chemicals called salicylates, amines, and glutamates. 

These chemicals are present in anything from chocolate, to coffee to cheeses. Eliminating them completely naturally proved quite the chore, and even once I did, my condition scarcely improved. 

After a few months of attempting to be vegan, things only worsened, my belly swelling as tight as a drum.

When a rash surfaced on my back like an inflamed continent, I conceded that maybe my self-diagnosis was wrong.

Previous adversities had left me reluctant to ask for help, to trust that others really had my best interest in mind. Yet this same reluctance meant I had inadvertently prolonging my chronic illness.

Seeking treatment

A somewhat lengthy and expensive battery of tests confirmed that I indeed had been wrong about having Coeliac disease. What I was actually suffering from was Irritable Bowel Syndrome (IBS).

While both conditions share common symptoms, what my body seemed to have been reacting to was not the wheat protein gluten, which typically causes the immune reaction in Coeliacs sufferers.

My triggers were in fact FODMAPs, the carbohydrates previously identified by my dietician. This explained why my body responded adversely to high-FODMAP foods such as wheat, milk, nuts, and beans.

Had I listened to the dietician and trialed the low FODMAP diet, I would have been spared not only my usual raft of symptoms but the development of a new, secondary condition: small intestinal bacterial overgrowth (SIBO).

If IBS could be at times unbearable, SIBO had the effect of only exacerbating the symptoms.

Treating the SIBO with antibiotics decimated my gut microbiota. It also triggered a secondary infection of a parasite known as blastocystis hominis, suspected of stowing away on my body during my trip abroad.

The blasto infection sent me running to the toilet every hour, and could only be bested with still more antibiotics. 

Suffice to say, it was months before I returned to any semblance of digestive normality.

Accepting what can be changed

Part of the problem was that IBS is a condition whose triggers vary from individual to individual. One person may digest a slice of cheesecake with ease, while another will be stricken by paroxysms of diarrhea.

When I expressed my desire to “get better” to my gastroenterologist, he laughed. IBS was a “functional” condition, quite unlike more serious conditions like Crohn’s disease. Expecting complete recovery simply wasn’t reasonable.

Was this, then, what I was paying this man for? A tidy response absolving him of any responsibility? Yet another “hypochondriac” dismissal? 

Certainly, chronic health conditions are often complex, and the problems they throw up insoluble. But if my gastroenterologist wasn’t interested in helping me explore the possibility at least of improved health, then it fell once more to me to try.

To this end, I explored all manner of remedies: antidepressants, antidiarrheals, antianxiety medications, fiber supplements, peppermint capsules, digestive enzymes, natural supplements, antispasmodics, probiotics, exercise, hot pads, meditation, acupressure, and hynotherapy.

By isolating potential trigger foods, I discovered that the recommended fiber supplements were actually making things worse.

Another contributing factor was a substance known as resistant starch, which can be found in many IBS-friendly staples. As it turned out, something as seemingly innocuous as reheated rice or potatoes often was more than enough to ruin my digestion. 

The modifications I eventually settled upon involved quitting coffee and curtailing fiber, fat, oil, sugar, and resistant starch. Intermittent fasting, which involved restricting my eating to an eight-hour daily window, proved infinitely helpful. 

Meals were kept to three in total and limited to reasonable portion sizes, taking the pressure off my admittedly delicate digestive tract. Adding peppermint supplements, enzymes, and anti-diarrhetics further supported my digestion.

Lifestyle changes were also in order. There was to be no more round-the-clock workaholism. Time would need to be made now for a regular exercise routine, daily meditation, and relaxation.

As it turned out, the gastroenterologist had indeed been wrong for laughing off my complaints. A better state of health was indeed possible.

While some health conditions may be in part or completely out of our control, management or easing of symptoms is always possible. Quality of life is never an unrealistic goal.

Identifying a key need and a strategy

“What do I need most?”, “Is it realistic?”, and “How do I achieve it?”

For those of us suffering from chronic illness, these three questions can be the determining factor for both our physical and psychological wellbeing.

In my case, my foremost need was being able to eat nourishing, delicious food without getting sick.

The dietary limitations imposed by IBS meant eating out was a fraught affair, so avoiding tummy upset going forward would require I make all my meals from scratch, going forward.

Even after I threw out all my current go-to recipes, many of the IBS-friendly alternatives I found online contained other foods that were triggers for me, such as oil. 

The only way I was going to fulfill my tasty food cravings therefore was by getting creative. So for the next year, I recipe tested like heck, substituting problem ingredients with symptom-free alternatives. 

Most meals I produced during this period were, for the most part, healthy, if a little bland. But by the second year, my culinary game was on the up, and I had at least four passable meals under my belt. Then suddenly they weren’t just passable – they were delicious.

As cooking IBS-friendly meals from scratch could be an expensive and time-consuming process, I began bulk-buying and batch-cooking.

This strategy ensured I spent less time in the kitchen carefully measuring ingredients. Instead of or shuffling through the supermarket, poring over the price tags of often more expensive low-FODMAP alternatives, I was now able to spend more of my time savoring the fruit of my labors.

Seeking support with chronic illness

Being forced to carefully monitor everything I eat, while managing occasional flare-ups can at times be stressful. 

Sometimes I’ll catch myself trying to “silver lining” the situation, reassuring myself of the benefits of having IBS. The forced dietary changes for example have rendered me permanently lean. 

Some fitness fanatics might consider this an ideal result, but practically speaking, not having “rainy day” body fat can be a problem during periods of illness when I’m most prone to rapidly dropping pounds.

Chronic illness has brought many periods of frustration and despair. Key to our endurance in such instances is having someone we can talk to about our difficulties. As the old adage goes, “A problem shared is a problem halved”.

While loved ones can ever truly know what it’s like to walk a day in your moccasins, they can certainly empathize. But if you find no respite in venting to friends and family members, a sympathetic-ear-for-hire may be another option. 

Therapists not only provide a supporting environment – they are specifically trained to help clients with identifying custom-fit coping mechanisms.

Therapy for some isn’t financially tenable, while others may not be comfortable opening up to a stranger. In such instances, it’s worth exploring other avenues, such as online communities or support groups for people with your condition.

Failing that, a daily “mood” diary is always a great fallback. In moments of stress or high emotion, consider jotting down in detail what you’re feeling, why, and the circumstances or situations surrounding these feelings.

Diary writing when suffering chronic illness can be cathartic for the sheer reason that it allows us to divest ourselves of burdensome thoughts and feelings. Without an outlet, they may otherwise continue to rattle around inside our brains, draining our strength and impeding our wellbeing.

Diary writing in this sense is preventative, acting as a pressure valve. It allows us to release what we are carrying in a safe and constructive way, offering us valuable perspective on our difficulties.

Takeaways

Essy Knopf

Essy Knopf is a therapist who likes to explore what it means to be neurodivergent and queer. Subscribe to get all new posts sent directly to your inbox.

www.essyknopf.com