Can Versus Should, Take 2

(Second in a series of occasional posts on pregnancy, children, and chronic illness.)

It was wonderful to hear from so many of you at different stages of decision-making, pregnancy, and parenthood. The feedback from my recent post on pregnancy and chronic illness unraveled so many interesting angles, from questions of inheritability to adoption to child care, and I’m interested in pursuing all of these in more depth.

The most compelling and complicated question remains, of course, can you versus should you. However, the theme I’d like to explore is the sentiment that “it takes a village” that my friend mentioned in a comment. I’m partly drawn to this because I think it’s emblematic of living with chronic illness in general, and also because I’ve been thinking a lot about health care reform and chronic illness.

After all, anyone who lives with chronic illness already knows the juggling it requires, the multiple roles the people who love us take on for us, and the complications it adds to life decisions.

Pregnancy, infertility, adoption, and parenting are extraordinarily challenging and life-changing no matter your health status; factor in the demands of chronic illness and my immediate thought is yes, it really does take a village. If what makes effective health care is a hot political topic right now, than carving out a niche for the many women living with chronic illness who are pregnant or want to be parents is appropriate.

There are both medical and personal implications of this notion of a village. If there’s anything I’ve learned from twenty-eight years of being a patient, it’s that when different doctors and specialists work together, the patient benefits. I love that my (new!) primary care doc, my lung doc, and my other specialists know each other and confer with each other about my care.

Many chronically ill women have high-risk or medically intensive pregnancies, and just like women in high-risk situations who did not have additional existing chronic illnesses, their needs demand close monitoring and thorough, attentive care from their obstetricians. But for many women with chronic illness, the best situation is one in which all of the doctors who make up their health care team work with each other—whether it’s discussing risks of certain medications on fetal development or the best way to handle a disease exacerbation in late pregnancy, this communication is essential.

But of course this medical village is only the beginning. Issues of infertility and high-risk pregnancies aside, what I’ve heard from many of you, and what corresponds with what I discovered when talking with patients for my book, is that caring for the child once he or she is in your life is an immense challenge. (Notice I didn’t say once you’ve given birth, because no matter how you decide to become a family, you’re still trying to balance the same problems.)

“How can I care for a baby on the days when I can barely take care of myself?”

I’ve heard that question posed many women with many different types of chronic illness. Some are incapacitated by pain, other battle life-threatening exacerbations, but the universal question remains the same. And the answer, of course, is that you can’t do it alone.

So who would make up your village? Would spouses, relatives, and good friends be able to bridge the gap for you? If you needed regular help with child care, could you afford it? If you need to maintain some sort of income after maternity leave, does your job have any flexibility?

More simply, do you have a plan in place so that you can be the parent you want to be without completely sacrificing your own health?

It isn’t easy, and in an ideal world the cost of chronic illness and health insurance and child care and all those variables we have to consider would be more reasonable. In an ideal world, we could count on our bodies to be somewhat more reliable, and we wouldn’t have to choose between the immediacy of the present and the potential long-term outcome so often.

But we’re not there, we’re here. So whether it’s assembling a medical team that works for us or figuring out a back-up plan for those days when our bodies fail us before it happens, building a village that is strong and restorative is the best thing we can do.

And in the end, aren't so many of us already living proof that yes, it does take a village to thrive?