Those of us with chronic conditions spend a lot of time wondering how to manage their impact on our own ravaged bodies and spirits. But along the way, it’s hard to ignore the impact they have on our families. I know that has been a concern with me in my own family. Unlike the extended family which may or may not grasp what is really happening, the impact on the immediate family can be very direct. Even for them, though, a condition like Lyme disease can be confusing and invisible. How this affected my husband and our relationship is a topic for another post, but what I want to concentrate on here is how it affected my children. I have a (now) 4 year old and (almost) 6 year old in addition to a husband who have journeyed through my chronic condition with me over the last three years.
I have found myself writing about this more than once in the past few months, often in impassioned emails supporting friends or acquaintances suddenly thrust into a form of mothering they neither wanted nor planned for. For myself, perhaps the hardest part of this is finding the balance between putting myself first and protecting my children. Here is what I have learned over the years, and some details on how I coped.
First, and most important: In crisis you have to put yourself first. But perhaps less obvious — you also have to do so in a chronic situation. What your children need, more than anything else, is you. To give them that you need to protect yourself, and maintain the best health you are able to. Also, I subscribe to the good enough parent view — your children will benefit from seeing how you work through a difficult illness, including what you prioritize, and that even though it’s hard you do it. You don’t need to hide everything from them, even when they are young.
Second: I did a bunch of research into how kids handle having a parent who’s sick. I talked to friends who had dealt with this, and even (now grown) children of one friend, and was pleasantly surprised by the positive outcome — descriptions of a deep ability for compassion and caring that we all hope our kids will learn, whether we are sick or not. At the same time, how you talk about your sickness does have an impact on the outcome. In my experience, young children will imitate the symptoms much more if you talk about them explicitly than if you just live them. Asking for help or saying you can’t do something because of what you’re going through seems to have a much more positive impact at this age than discussing the details of what you’re feeling (e.g., what hurts). That seems intuitive, but it’s really hard to control all the caring adults who want the details in the kids’ presence, and sometimes even yourself when you need to explain something to, say, your husband.
Third: Be forgiving of how you spend your parenting time. At times, I could not get up and run and play, but a warm lap and heart was always available to my children. Even so, they knew they had a mommy who napped (no big deal, some kids nap too right? :). Sometimes they had a mommy who rested when she was taking care of them. An alarm was a great way to encourage them to play independently, knowing that when it went off they could demand my attention again. At other times I got creative. We did so much together with so little — for example, one spring we built a cloche in the garden. This seemed like a daunting task, and in fact we did only a tiny bit each day we worked on it. But it was ideal for the kids — instead of an adult who wanted to rush them through something, I was happy to sit in the warm sun and watch them spend 10 minutes trying to get one screw into a piece of wood. I was happy to define today’s task as sawing a single board. We took it one step at a time, and were amazed by what we had wrought by the end.
Fourth: To the extent possible, you want to focus what energy you have on your family, not mowing the lawn or scrubbing the bathroom. People in my world were in general really bad at stepping up, they are so so busy, and they really don’t know what you need when a condition is invisible and long term. You have to get over that and ask for help and/or hire help to make the things you need happen. If you have the financial means to do so, don’t hesitate to arrange for help.
Fifth: Having someone relatively impartial whom you trust to talk this stuff out with really really helps, especially when you are trying to balance the difficult issues of family, health, and (in my case) trying to stay above water at work. I started therapy shortly after I was diagnosed and it’s been invaluable (I got lucky and found a really good therapist).
I was lucky to have an extremely supportive husband through all of this, who never questioned the veracity of my experience. I also had the financial means and familial support to get help at least some of the time. So this advice is based on what one might call the best of circumstances. Even so, the last couple of years have been difficult for my family. But I truly believe that my children were not harmed, and if anything we have all grown from the experiences we had.