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 (in consultation with a professional, perhaps) 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