Parents who struggle with a chronic illness have a lot on their plate. But they've also found ways to appreciate life that we can all learn from.
Just a little while after Cathy Roll and her husband, David, adopted their daughters, Grace and Christine, then 6 and 8, they got news that changed their brand-new family forever: Cathy was diagnosed with multiple sclerosis (MS).
"I had been struggling with pain and fatigue even before we went to Ukraine for the adoption," Roll recalls, "but after we returned, it was just relentless. At first I thought, 'Well, maybe this is what motherhood is all about.' But chasing around after two children made me so incredibly tired, like I had fallen into a dark hole."
She had. Seemingly over-night, the 48-year-old mom from Englewood, Colorado, found herself navigating the unpredictable reality of chronic disease, the term used to describe any long-term illness that can last or recur over a lifetime. Such conditions affect tens of millions of Americans, many of them mothers and fathers of young children, and include diagnoses like MS and other autoimmune dis-eases, as well as diabetes, asthma, and depression. Because of treatment breakthroughs and the likelihood of recurrences, cancer is also often considered a chronic illness, not just a terminal one. Even on the days and weeks that these parents are symptom-free, they live with the threat of flare-ups, as well as the worry of how they will care for their children when their lives are interrupted by the demands of their illness.
"Handling chronic illness is about learning to live in balance," says Rosalind Dorlen, Psy.D., a psychotherapist with Overlook Hospital, in Summit, New Jersey, who specializes in treating the depression and anxiety that often accompany long-term health problems. "You can't dwell on questions like, 'Why is this happening to me?' or 'What if it gets worse?' But you do have to be constantly conscious of your health status, and take the time to rest, exercise, and have fun. It's important to focus on feeling well and to maintain a positive outlook." And many parents have learned to do just that.
Accepting the New Reality
For many moms and dads, the first hurdle is revising their expectations of family life. "Of course, you can still be a loving parent, but some adjustments will have to be made," says Elvira Aletta, Ph.D., a psychotherapist in Amherst, New York, and mother of two who has been diagnosed with scleroderma, a chronic auto-immune illness. "Your family life will not look the way you imagined it would. That's a loss, and it hurts a lot."
For Kirk McDonough, 41, who has been suffering with severe arthritis since he was 21, the hardest part has been giving up the idea that he'll be an active, athletic dad to son Shane, 7, and daughter Cate, 4. "Shane is already into both hockey and lacrosse," explains McDonough, who lives in Cranston, Rhode Island. "I just can't do those things with him, and it's very tough." It's also frustrating, he says, that most people consider arthritis to be a disease that only affects the elderly. More than two thirds of people who have the diagnosis are younger than 65.
A chronic illness can even change your plans about having more children. Diana Morgan, 34, was diagnosed with diabetes when she was pregnant with Fiona, now 3. The pregnancy was such an ordeal that she doubts she and her husband would go through another one. "We may have a second child, but it will not be coming out of my body," says Morgan, who lives in Las Vegas. "My final trimester was so medically managed, it felt like I lived in that fetal-medicine clinic. If we have another child, we'll adopt."
Besides such big-picture adjustments, there are day-to-day shifts. "Constantly recalibrating is really important," says Dr. Dorlen. "Maybe your shoulder pain is so severe that you can't pick up your child today, or your energy level makes even the simplest games impossible. You have to be much more adaptive."
Easier said than done, of course. "That cycle of good and bad days is the most frustrating thing about having a chronic illness," says Maureen Yacobucci, 34, who lives in Arlington, Virginia. She was diagnosed with the autoimmune disease lupus six years ago, and has a 5-year-old daughter, Margaret. "You have a few good days and get a lot done. Then you have a bad day, where even making dinner can seem like a lot. During those times I don't have the energy to play with Margaret as much as I'd like to. It's hard."
Fighting fatigue is another challenge. "My blood sugar is harder to control if I'm not getting enough sleep," says Morgan. "And between work and chasing a toddler, I have all the same struggles with sleep and stress as other mothers -- it's just that with diabetes, the consequences are very different. I won't only get grouchy, I'll get very, very sick. Last winter, I had bronchitis five times. Managing diabetes takes work, and if you're not feeling well, it's hard to do it right. I'm learning to put my own needs ahead of my child and my husband, but it isn't easy."
Enlisting the Right Support Team
When Bruce Feiler, of New York City, learned that he had a seven-inch cancerous tumor in his leg, he immediately thought of his twin daughters, who were 3 at the time. "If I die, will they wonder who I was? Will they yearn for my voice? I thought about the things I'd miss -- the boyfriends I might not be able to scowl at, the art projects I wouldn't get to hang on the wall," he says.
Soon after, the idea came to him to ask some of his favorite men to form a group called the Council of Dads to help look after his daughters. One was designated to teach the girls the joys of travel as they grew up, for example, another to teach them all about nature. "Not only did it reassure me that my daughters might know what I might have taught them, but it gave me a wonderful chance to talk to these men and tell them what they meant to me, and ask for help," says Feiler, 45, who has been cancer-free since 2008 and recently chronicled his experience in The Council of Dads: My Daughters, My Illness, and the Men Who Could Be Me. He recommends other families consider a similar approach, even if they aren't facing a life-threatening illness. "It helps families re-create a sense of extended family, and builds a bridge between relatives and friends, right when you need it most."
For many parents, disease-specific support groups can be very beneficial and are often the only outlet where they can discuss their condition freely. Roll, for example, says an MS group was extremely helpful in the early days, providing perspective and even a dose of gratitude. "My injections cost $2,000 a month," she says. "I met women in the group who couldn't afford medication, and I realized that we're so lucky to have an insurance plan that covers it."
It's also vital to talk about your feelings with a mental-health provider who has expertise in helping people with chronic illnesses, since depression -- a recurring illness itself -- is one of the most common complications of chronic disease. Experts believe that as many as 35 percent of those who are chronically ill develop depression too. Diagnosing and treating that depression can be tricky, since so often the symptoms, like fatigue and changes in appetite, are similar to problems of the first illness, or even to the side effects of the drugs used to treat them.
Finding ways to fend off those dark days is important. Jamie Young, 40, was diagnosed with lung cancer when her only child, Ryan, was 2. Young, who lives in Walls, Mississippi, says that most of the time she is upbeat and optimistic. But about a week before each of her twice-yearly checkups, she feels a cloud of fear descending upon her. Even Ryan, now 7, notices it. "I call it scan-xiety. When I was diagnosed five and a half years ago, I learned I had a 15 percent chance of surviving past five years. And right before an appointment, it's hard not to think about a recurrence, and let that worry bring you down," Young explains. "I'm now considered to be in full remission, but due to the extent of the disease when I was first diagnosed, I can never be completely cured."
Rana Kahl, 43, a breast-cancer survivor and mom to Aiden, 7, and Ethan, 3, feels guilty about what her illness has meant for her husband. "Yes, I was the one who had to suck it up and go through all the treatments, but poor Kevin had to stand by and watch. I worried about leaving him a single parent," says Kahl, who lives in Manassas, Virginia. But she explains the impact the situation has had on their marriage: "We learned what unconditional love really is, in its truest form. We had to figure out how to navigate our new normal -- and we still do, each and every day."
Letting Kids Be Kids
The effect of chronic illness on children is often the most heartbreaking part for a sick parent. On a family trip to San Diego, for example, McDonough was upset to realize how Shane already walks slowly on purpose in order to accommodate his dad. "I hate that. Sure, I love that he's so thoughtful. But I don't want him to have to think about slowing down just for me."
Roll has been there too. "There are days when I have a flare-up, and I just need to go to bed," she says. "And I'll tell the kids, 'Mom is having a bad MS day.' I try to be matter-of-fact, but I worry that if I tell them too much they'll think they are losing me."
Finding that middle ground is key, says Susan McDaniel, Ph.D., director of the Institute for the Family at the University of Rochester. Trying to hide your illness can be very damaging, she explains: "Even young children can pick up those vibes, and it's scary for them. So the trick is to find an age-appropriate way to say, 'Mom is sick, and there are some times when she needs to 'rest.'"
It's also important not to dump too much responsibility on children, relying on them to help you or oversee a younger sibling, insist the experts. "Get help from other adults and then go back to the business of being a parent as soon as you can, and help children know that the adults in their lives will find ways to let them be kids, not caretakers," says Dr. McDaniel.
Embracing the Good Things
Despite the many problems that come with chronic disease, a surprising number of families believe their experiences are also shaping them for the better. Le Kieva Campbell, 32, has struggled with severe asthma since she was a toddler; so does her son, Khalil, 4. "It's certainly hard seeing your child suffer the same way you have," says Campbell, who lives in Tallahassee, Florida. "But when he's having a bad attack, it's so helpful that I know exactly how it feels. It's scary, like having an elephant sit on your chest, and I understand."
Seeing how well Khalil's doctors have been able to control his symptoms inspired Campbell to be much more proactive about her own treatment. "It's incredible how much I've improved just by switching some medications around. Most of the time, I'm symptom-free. Because of my son, I'm doing a much better job with my own asthma."
And in fact, many experts believe that for some families the positives that come from handling a long-term health problem can eventually outweigh the negatives. "Everybody talks about post-traumatic stress, and that can be a real issue in chronic illness," says Dr. Dorlen. "But there's also something called post-traumatic growth. Not everyone finds meaning in his or her illness, but many do. They'll say it's become the way they've discovered just how strong their family really is."
"I know it's a clich?, but getting sick has been the biggest blessing of my life," agrees Young, who says there are times -- when she's directing the middle-school band, playing her saxophone, or just goofing around with Ryan -- when she realizes just how happy she is. "Even though I've been cancer-free for several years, I really do strive to make every single day one of the best of my life."
How to Help a Sick Mom Friend
Trying to be there for another parent can feel awkward. Some ways to make your offer of assistance easy to accept, from Dr. Elvira Aletta:
Let her know how simple it is for you to help.
Say something like, "I'm going to the store. What can I get for you?" or "I made too much for dinner. I'm bringing over some lasagna."
Just stop by.
"I was in the area and felt like walking your dog" or "Can the kids join us for some ice cream?" have a spur-of-the-moment appeal.
On average, chronically ill people have four days a month when they can't function normally. So the more you ask, the more likely your offer will fall on a day when even a fiercely independent friend needs a hand.
Come up with a recurring plan.
Enlist three or four friends to make a hot entr?e, say, every Wednesday, or offer to incorporate caring for her kids into your schedule, like taking them on Saturday trips to the playground. That way, she knows she can count on some downtime.
Phrase your offer as a specific suggestion.
"My boys could use some company. How about I pick up your kids at noon for a playdate?"
Originally published in the September 2010 issue of Parents magazine.