Parenting with a chronic illness

If you have a chronic illness, you may have gone through the five stages of grief after a diagnosis: Denial, anger, bargaining, depression and acceptance. As moms with chronic conditions know all too well, those stages are often journeyed anew under that lens.

After some grieving, I vowed never to do it again — because the best mom to my kids is me, whether I am full of energy or resting on the couch.

The key is to focus on your own family — your spouse/partner, children and pets — and what you can do for them amidst the reality of your health. And don’t worry about everyone else. Your conditions don’t define you, but there are limits that are real.

So with that in mind, AutoimmuneMom.com writer Dr. Gary Rothbard did some research about what studies have been conducted to find the best tactics for parents — moms in particular — with chronic conditions. Here’s what we found:

Uncertainty is especially difficult for children to deal with in the face of a parent’s chronic illness, and anything you can do to ameliorate this can be extremely beneficial. As much as possible, explain your disorder to your children frankly and clearly, while using your discretion as to what is age-appropriate.

Try to inform and reassure them, without being dishonest about your condition. Information, even when it’s negative, often helps kids to understand the illness more completely, leaving less to the imagination. Keeping your children informed has the potential to help them avoid or mitigate the anxiety and depression that frequently occurs in these situations.

Children with a chronically ill parent may begin to develop problem behaviors, in response to the illness itself and its potential consequences, and/or the time and energy the disease consumes, which is then perceived as a lack of attention, according to studies.

They may manifest these feelings externally, as in acting out, or having a lack of impulse control; or internally, with the development of depression and anxiety, or a withdrawal from social activities. Either way, the key to getting a handle on these behaviors is first to notice their presence; then any number of methods can be tried to help curb such occurrences. This is best accomplished using a family-based approach, where the healthy parent and siblings are involved in establishing a balance and finding solutions to behavioral problems.

Chronic illness can have a massive impact on parental functioning and the ability to carry out normal activities of daily living. As a result, it is important, though understandably difficult, to try to remain cognizant of any clear differences in your own behaviors or actions. Upon noticing any changes, the first thing you must do is take care of yourself, getting whatever help you might need.

Then, if you suspect that your parenting skills may be suffering from dealing with your disease, it is vital that you recognize this problem and then seek out help to correct the issue, whether that means getting extra rest, utilizing child care coverage from family and friends, and/or seeking professional counseling. Be creative — maybe your neighbor can watch your kids while you rest, and then you can return the favor with something that doesn’t require a lot of energy, like watering plants while they are on vacation.

Besides being crucial to familial adjustment during such times, it has also been demonstrated via cancer patients that recollection of parental indifference or dysfunction tended to negatively affect coping mechanisms for those with the disease. That is, offering the comfort of a functional and attentive family may also one day aid your children in dealing with a chronic illness as well.

Up next: More about parenting with a chronic condition

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Obviously this is easier said than done, depending on the condition, but it is very important that in caring for the family, you don’t forget about caring for yourself. Your children will certainly not benefit, and may indeed be impacted negatively, if you stretch yourself too thin, to the point of being unable to take care of your own health.

In order to help your children through this ordeal, you must first help yourself. Remaining as healthy as possible will result in an increased ability to care for those around you. Examples are eating right, exercising and yoga/meditation; but doing so also involves frequent clinical follow-up visits and a clear idea of long-term health care needs, as well as remaining generally well-informed about your condition. Keeping on top of your disease and your overall health can dramatically improve family dynamics and functioning.

Keeping things as normal and unchanged as possible will help children to continue their daily lives with as little problems or interruption as possible. However, with a parental chronic illness, this isn’t always possible, or at least not entirely so. For this reason, it is essential, in conjunction with keeping your family informed, to explain to your children and spouse that some things might change, and what to expect if and when these changes occur.

Changes might alter the way you spend time together, but not that you do. For example, high-energy activities can be replaced or pared back with creative at-home activities that may be even more fun, especially if it means you can fully participate.

Transitions are difficult enough for many kids, so anything you can do to anticipate and explain these changes would be quite helpful. Having an idea of what’s to come — even if it’s that you aren’t sure how you’re going to feel when you wake up each day — and a plan in place for how to adjust when it does, can help children and the entire family better deal with the complexities of a parental chronic illness, and the dynamic changes that occur within the family when a parent is not feeling well.

Above all, family needs change as kids grow up. There will always be good times and hard times, even in families with healthy parents. But every day is a new opportunity to make adjustments that help everyone in the family feel supported and loved.

About the authors

Dr. Rothbard is a professional medical writer and consultant based in New York City, specializing in medical education articles targeted at a variety of audiences, from children through clinicians. After leaving medicine, he worked as a biology and medical science educator for several years, before deciding to pursue writing full time. He may be reached at grothbard@hotmail.com.

Katie Cleary is founder of AutoimmuneMom.com, a website dedicated to giving support, ideas and information to moms with multiple autoimmune conditions. She lives with her family in Austin, Texas.

This post contains opinions of the authors. AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis or treatment. It is your responsibility to seek diagnosis, treatment and advice from qualified providers based on your condition and particular circumstances.

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