Chronic Illness—A Family Affair

Chronic illness sticks around far longer than we’d like. It’s not something that clears up after a quick op or a week’s worth of antibiotics. As one professor put it, chronic illness “is an altered health state that can’t be fixed with a simple operation or a quick round of pills.” The real punch in the gut comes not just from the illness itself or the mountain of treatments, but from the grind of having to deal with it for ages – maybe for the remainder of your life.

The fallout from chronic illness rarely stays in one lane, either. “Most people are part of a family,” says the book Motor Neurone Disease—A Family Affair, “and the shock and anxiety you feel will also hit those closest to you.” This lines up with what a mother shared about her daughter’s cancer—everyone in the family feels the impact, whether they show it or realise it or not.

Not all families are sideswiped in the same way. If relatives have a clue about how chronic illness tends to affect people, they might have a better shot at handling the mess. Friends, colleagues, neighbours and classmates can also do a better job of supporting the family if they get what’s really going on. Let’s talk about how families get thrown off course by chronic illness.

A Journey Through Foreign Territory

Dealing with chronic illness in the family can feel like stumbling around in a country where you don’t speak the language. Some things look familiar, but plenty of others leave us scratching our heads. While much of daily life carries on as usual, some routines get turned upside down.

The illness might barge in and wreck our schedules, forcing everyone to adapt just to keep their heads above water. Take 14-year-old Helen, whose mum has severe depression—she says, “We change our plans every day, depending on what Mum’s up for.”

The so-called “help” from therapies doesn’t always make things easier, either. Consider Mike and Rachel, whose kids needed frequent hospital visits. “We had to totally change our days around just for their therapy,” says Mike. Rachel adds, “We were always shuttling to appointments. On top of that, the doctor told us to feed the kids six small meals a day. I had to totally rethink how I cooked.” To add more chaos, they had to coax their children through daily muscle exercises—not exactly a fun way to bond. Rachel calls it, “a daily battle of wills.”

Patients rely on the family for everything from emotional backup to hands-on care. Everyone ends up learning new skills, revising their attitudes and reshuffling their routines. After weeks, months or even years, this wears families out. One mother, whose daughter battled cancer, said it was “more exhausting than anyone on the outside could ever imagine.”

Living With Uncertainty

“The constant swings of chronic illness bring a heavy dose of uncertainty,” says Coping With Chronic Illness—Overcoming Powerlessness. Families might just be getting a grip on one set of problems when something new lands on their plate. Symptoms can bounce around or suddenly get worse, treatments might not work, or the side effects can create fresh headaches. Sometimes therapy needs to change constantly, and there’s always the risk of an extra complication popping up. Emotions run wild while everyone tries to keep going.

Chronic illnesses don’t hand out timelines, either. Nobody knows how long the ordeal will last, how much worse it’ll get, or how much more they’ll be asked to handle. When the situation turns terminal, the brutal uncertainty about death hangs over everyone even more.

The illness, therapy, bone-deep fatigue and nagging doubts all build up and spill over into other parts of life.

Social Life Takes a Hit

Kathleen’s husband suffered from chronic depression. She said, “I had to deal with overwhelming isolation. We were stuck. We never socialised because it was just too much. Our social lives basically disappeared.” This isn’t rare. Many families feel guilty for not keeping up with friends or for not hosting anyone. Why bother, right?

Sometimes illness or the misery from the treatments makes social outings impossible. Sometimes families start to feel like outsiders or worry about embarrassing themselves or others. Depression can make people feel unworthy of their old mates, or the whole family can be too wrung out to care about socialising. Whatever the reason, chronic illness can leave everyone feeling cut off and lonely.

And to top it off, people don’t always know how to act around someone who’s ill or disabled. Ann says, “When your child is different, folks stare and say daft things. You already blame yourself for the illness, and their comments just pile on the guilt.” That brings us to another common part of chronic illness nobody likes to talk about.

Emotional Whiplash

“Most families react with shock, disbelief or straight-up denial at first,” writes one researcher. “It’s just too much to take.” When we get the news that a loved one has a serious or long-term illness, it often feels like the future just crumbled, bringing grief and a deep sense of loss.

For some families who’ve watched mysterious symptoms for months, finally getting a diagnosis is a relief. For others, it’s a punch in the gut. One mother in South Africa confessed, “It hurt so much to be told what was wrong with our children that honestly, I wish I hadn’t heard it.”

Diana Kimpton wrote in A Special Child in the Family—Living With Your Sick or Disabled Child that “emotional turmoil is normal as you get used to your new reality. Sometimes your feelings are so heavy you wonder if you can handle it.” She admits, “I was scared of my own emotions and I had to remind myself it’s ok to feel awful.”

Fear isn’t rare—fear of the unknown, the illness, treatments, pain and death. Kids, especially, often have silent fears if nobody talks to them about what’s happening.

Anger is another regular guest at this party. The South African magazine TLC points out, “Family members often become targets for the patient’s anger.” We might also get mad at doctors for missing the problem, at ourselves for passing on dodgy genes, at the person who’s sick for not looking after themselves, or even at the universe or God for causing so much suffering. Guilt piles on too. The book Children With Cancer—A Comprehensive Reference Guide for Parents says, “Nearly every parent or sibling of a child with cancer feels guilt.”

All this emotional roller-coastering, more often than not, leads straight to depression. One researcher says, “It’s probably the most common reaction—I get letters about it all the time.”

Yes, We Can Survive This

Here’s the twist—many families learn they can cope, even if it doesn’t look that way at first. As Diana Kimpton wisely notes, our own nightmares tend to be worse than real life. She discovered that “the future is hardly ever as black as it looks in those early days.” Plenty of families have slogged through the wilds of chronic illness and come out the other side. Sometimes just knowing others have made it helps us breathe a little easier.

Naturally, the big question is—how do we actually manage all this? In the next piece, we’ll explore ways families can keep their heads above water when chronic illness comes knocking.