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."