Category Archives: pregnancy

Color Me Riled Up

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My mother always said she could tell when I was feeling better because I had the energy to be riled up about something. Well, I’ve been free of acute infections for a whopping two and a half weeks, which is actually a December-January record for me, and it’s time.

I’ve written about pregnancy and chronic illness several times, and from different angles: can versus should, the waiting game, etc.

The decision to carry a child, use a surrogate, pursue adoption, or remain childfree is intensely personal and depends on so many variables: disease progression, diagnosis, finances, health insurance, religion, culture, etc.

I completely understand and respect women/couples who, given their particular health and life situations, decide pregnancy—and perhaps parenthood itself—is not for them. (I am focusing on this in relation to chronic illness; I realize these family-building decisions are incredibly complex absent chronic illness, too.)

But what bother me are the blanket generalizations that people with chronic illness shouldn’t have children because they will pass on their bad genes and/or because that child’s quality of life will not be what it could (should?) be if a parent is sick. I made brief mention of this in my Dear Thyroid post, but didn’t get into detail.

You wouldn’t believe where I’ve heard/seen these types of comments: cocktail parties, wedding receptions, blog comments, etc. Usually, the people talking don’t know my situation; they’re just making sweeping claims in passing about things they really don’t know much about.

Internal monologue #1: It’s easy to be a smug 20-something guy two beers into a party and say you wouldn’t marry or have children with someone who’s sick, but let’s just hope for both your sakes that your fiancée isn’t one of the millions of healthy young women who will go on to develop autoimmune or other chronic conditions during peak marrying and child-bearing years. Internal monologue #2: You are only reminding me how incredible my husband is, so thanks for that.

Inheritability is a very serious issue, but there’s a huge spectrum of diseases, from those with a definitive test for direct inheritability (eg Tay-Sachs) to diseases with a genetic component (eg celiac disease). Medical experts have told us if we decide to have children, they are not at risk of being born with PCD. As for the other diseases floating around in my family’s genetic pool, yes, there are many. But considering 130 million Americans live with some sort of chronic condition, are there really that many people who can say things like heart disease, cancer, diabetes, or arthritis, which often have a genetic component, aren’t in their family history?

Want more on this? Please read an older post I wrote on genetic ignorance.

As I think about the second point, the quality of life issue, I am sidetracked by this NYT article on surrogacy. I found the article sensationalist and unbalanced, and was not surprised by many of the vitriolic comments that followed.

I don’t want to get too bogged down in a pro-con discussion of surrogacy and IVF, or the spectrum involved: one couple trying to have their biological child; egg donors; third-party arrangements, etc. But I’d like to point out that just as the majority of people undergoing fertility treatments are not Octomom, most people going through surrogacy are not 60-something, unmarried men who think it’s acceptable to bring bird feces into NICUs. (Confused? Read the article.)

In many ways, I see parallels between the mental illness issue in this article and chronic illness: who is qualified to make decisions regarding a patient’s fitness to raise children? Many people countered this article with comments like “Just adopt.” But I’m taking that phrase out of the context of the article, because it’s one people with chronic illness and/or fertility problems hear tossed around so often. (Cue pulse quickening and face reddening here).

See, here’s the thing. It can be incredibly hard for people with chronic illnesses to adopt. I can’t tell you how often I’ve heard that fear echoed by women with all sorts of chronic conditions. Also? Unless you’re considering the foster care system, which is a whole different conversation, adoption is often really expensive. In some states, and depending on health insurance, assisted reproduction is actually more affordable.

But more than that, throwaway phrases like “just go adopt” diminish what an incredibly emotional and difficult experience adoption can be for all parties. Yes, adoption can be a wonderful thing, but I’ve noticed it’s never the people who’ve gone through adoption who blithely proclaim, “just go adopt” like it is that easy, like it is simply a fallback plan. It’s usually the people who’ve never had to consider giving up a child or adopting one who make those comments.

So where are the in-depth, balanced, mainstream articles about adoption, articles that take a realistic (not sensationalist) look at what is gained and what is sacrificed? Why aren’t more people interested in eradicating disreputable or exploitive adoption agencies, the way we’re so quick to excoriate Octomom’s fertility clinic? (And for the record, reputable fertility clinics have this main goal: one healthy baby.)

Check out This Woman’s Work or Chronicles of Munchkinland for honest, insightful writing on the many benefits and drawbacks of open adoption from an adoptive mother and a birth mother’s perspective.

Similarly, there are those (again, usually those who have not lived with infertility) who say things like, “So can’t you just go do IVF?” And yes, many people with chronic illness can choose that route. But it’s emotionally and physically grueling (especially if you’re juggling other medical conditions), costly, and there’s also that little matter of no guarantee it will work. These are the realities patients who choose IVF accept when they make this decision, but to characterize IVF so cavalierly is really irritating.

Check out Relaxing Doesn’t Make Babies or Infertility on the Brain for honest, compelling writing about infertility, IVF, and loss. Religious and moral concerns aside (because they are many and varied, I know), can you read of such struggle and still say “Can’t you just go do IVF” like it’s as simple as getting a flu shot?

I have not delivered a baby or tended to the ever-present needs of a newborn while managing illness, and I am not currently in the process of adopting a child. But I am a person for whom these conversations are anything but rhetorical. I am not naïve, and as I’ve written in Life Disrupted and on this blog many times, I know that chronic illness complicates every single aspect of building a family and parenting a child. It requires a lot of planning, preparation, and yes, realism.

But to bring this full circle, let’s return to that quality of life issue. You see, this one I am qualified to speak about, because I am the child of parents with chronic illness, parents who were seriously ill when I was growing up and who continue to face challenges.

Yes, there were scary and sad moments, and yes, we all made accommodations for illness. But despite their sicknesses and mine, I had a wonderful childhood. When other kids had parents who wouldn’t let them play on travel teams or attend sleepovers because they simply didn’t want to drive them, my parents hauled us to hockey and figure skating, baseball and ballet—even when on crutches or chemo. They didn’t want us to miss out on anything. Even at the lowest points (disability and potentially terminal illness) they somehow made it work—we never doubted we were their priority, and they gave us every opportunity imaginable. Looking at things from an adult perspective, I am even more appreciative because I have a greater sense of the sacrifice involved.

So I’m a little sensitive when the topic of quality of life comes up, when I hear about how hard it can be for people with illness to adopt or hear passing comments about why people with chronic illness shouldn’t be parents. It boggles my mind the hoops people who aren’t “conventional” applicants must jump through in the adoption process, or the ignorance people who live with illness or must undergo infertility treatments (or both) can face. People who are fortunate enough to be healthy or to have no fertility problems don’t have these expectations on them, yet as we know all too well from headlines, simply being able to conceive and carry a child does not a good parent guarantee.

Some of the best parents I know just happen to have chronic illnesses. When I think of them, that is what comes to mind first: they love their children unconditionally, they put their children’s needs before their own, they give appropriate parts expectation and compassion to their children. I think of them as parents first, and patients second, and I think that reflects the way they live their lives: they are not defined solely by illness, and their children’s lives are not defined by parental illnesses, either.

To reiterate, of course there are situations where people decide their health problems are too overwhelming to add children to the mix. That’s a smart, responsible decision. But my point here is that it is a decision potential parents and their physicians should make, people with actual understanding of the factors involved.

(Cue stepping off soapbox. For now.)

Hope (or something like it)

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“Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.”
—Emily Dickinson

Fourteen years after I learned this poem for my freshman English class, I still remember every line. No, this is not because I am a fervent Emily Dickinson fan but because the paper I wrote about this poem turned out to be the first of several papers my teacher proceeded to read to her sophomore class, according to the sophomores cornered me at lunch to tell me. They were not at all impressed.

To get an idea of how awesome it felt to be the English nerd, here’s some more context for how cool I felt: the fall of my freshman year in high school, I was in a new school where a.) everyone knew each other already and b.) no one had ever heard of my hometown and didn’t seem all that interested in finding out more about it–or me. While everyone bonded on fall sports teams, I hobbled around on crutches, my reconstructed ankle still months away from healing. I prayed my ears wouldn’t visibly spew infected crap during school hours, and tried to hide how wheezy I got traipsing through the sweltering hallways one crutch step at a time.

Oh, and obviously I had glasses and braces, but come on, you knew that was coming.

As an adult, I can somewhat appreciate my teacher’s misguided enthusiasm for my ability to write a cohesive essay, but I wish she’d, you know, just written me a margin note or something instead of using my work to coerce her other classes into writing. She did my one-girl crusade for normalcy (invisibility?) no favors.

But enough digression. I’ve been thinking a lot about the word (or really the concept of) hope lately.

Some more context: I am a person of extremes. Now, I’ve evolved a little from my crazy full-course-load-and editing the school newspaper-and interning-and volunteering or spending-weeks-in-the-hospital dual existence in college. I’ve gotten sicker, I’ve matured, I’ve changed my treatment regimen, I’ve re-prioritized things and I’ve learned that occasionally, limits and common sense are good things. There is a middle ground between 18-hour days and the ICU.

But in many ways, I am still all-or-nothing. It is a strength and a weakness. Those who know me in real life know this. I know I certainly experience my emotions like this. When I get good news or learn about possibilities, I get so excited. The tenor in my voice changes, I have more energy, I am consumed. When there is reason to be joyful, I am not someone who can hide it, not in my words, my diction, my gestures, my expressions.

And this is a good thing—I don’t want to become someone who cannot or does not experience things so fully. But it is not without complications: my expectations for things are high, and my disappointment is correspondingly low. I can be hot-headed, and easily frustrated when things don’t work out. I can push things past the limit, and I can get too focused on doing to remember that goals are great but this does not mean they are not subject to revision. And sometimes should be subject to revision.

As I sit here preparing for another fall semester, I can’t help but think of that poem for more than its cringe-worthy memories. Though it has only been hot and summery for a few days in Boston, the shadow of autumn still manages to cut through the hazy humidity of summer. Leaves are scattered across the lawn already, and syllabi and new schedules must be set.

And for as much I love the fresh slate that is September, I am not ready. I’ve only just gained some semblance of stable health and in such a visceral way, I dread giving pieces of it back to every infection I know will come. My jaw clenches thinking about it. I do not want evenings to start at 4pm, I do not want to cough up blood, or lose holidays and weekends.

I would love September, if only October-April did not follow it.

I’ve put in long (long) hours on the book I am writing, and have realized the process is much slower than I had anticipated this time around. Reluctantly, I take research detours and “let things marinate” because it is what the book demands, but it goes against my nature to do this, especially with my daily word count stipulations hanging over me.

I’m expanding my editorial business and love connecting with clients and taking on new projects, and my excitement for it consumes me.

I am not patient. If I were, I would not exist so often in extremes. I have high expectations for my writing projects, for my career, for my health to remain stable, and for our future family (and that is certainly not an easy or quick process, either.)

I do not want to stand still when it is my nature to equate motion with progress. I do not want setbacks or delays; nor do I want winter, or to miss daily word counts, or to have taken such a circuitous route thus far towards being a parent.

And yet I yield.

All I can do is have hope: hope that things come to fruition as they are meant to; hope that I will have the wisdom to know when to pull back or push forward; hope that decisions we make now are right later, and hope that I don’t ever move too far from extremes. I don’t ever want to forget that fluttery, excited, jittery, all-consuming feeling. It took me fourteen years to name it as hope.

The Waiting Game (and how to play it)

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(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all–only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that’s okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I’m sounding a bit demanding here, aren’t I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor’s update: I forgot to mention that the best thing you can ask for are these words: “We’re here for you and support you in whatever decision you make.” Fortunately, this is is something I’ve heard often.)

* * *
A totally unrelated PS–Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!

Can Versus Should, Take 2

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(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?

Pregnancy, Children, and Chronic Illness: Can Versus Should?

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One of the most complicated chapters to write in
Life Disrupted was the one about pregnancy and parenting when you have chronic illness. There were so many variables to consider, and so many questions that don’t necessarily have answers.

As one of my doctors once asked, just because you can get pregnant, should you?

That’s not something that can be answered in a single blog post, a series of posts, or a chapter in a book, but it’s one I think many patients face in some form or another. I know it’s one we face, and have approached from all sorts of angles the past couple of years.

What makes it such a complex question is that the variables that go into it differ from person to person. From where I stand, there are two major concerns that dominate this discussion: (1) getting pregnant and safely carrying a baby when you have chronic illnesses; and (2) being able to care for said children when chronic conditions flare.

Like the severity and diversity of chronic illnesses itself, these concerns run the spectrum. For example, one young patient in my book suffered from chronic pancreatitis and wondered how she would manage child care during her severe pain episodes were she to have a child. She also worried about passing her condition on to her child. Another patient with cystic fibrosis became pregnant and was prepared to sacrifice her life for her child—and that was a legitimate possibility. She faced serious health challenges before delivering her healthy child, and had to agree to have full-time help caring for her baby afterwards before her physician would sign off on her pregnancy plan.

(For another poignant story of the risks and challenges of pregnancy and childbirth with CF, check out Confessions of a CF Husband.)

These are just some examples. I know pregnancy and type 1 diabetes has its own set of blood sugar concerns, or that multiple sclerosis exacerbations may actually improve during pregnancy but MS medications should be avoided while pregnant, and the list goes on…

And of course, there are chronic conditions that can cause infertility. I’ve written before about how PCD affects both conceiving and carrying a baby, and those concerns are separate from the issue of being able to care for children during prolonged exacerbations or hospitalizations.

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation, the issue remains the same: How do you care for children on the days when you cannot care for yourself? Those of you already balancing these competing needs, I’d love to hear your input. I’ve collected some patient stories on this, but it’s a conversation that continues to evolve, and the more voices the better.

If your chronic illness influences fertility or causes high-risk situations, how do you draw the line when it comes to medical intervention, whether it’s assisted reproduction or deciding when it’s time for a pre-term delivery?

There’s another distinction that fascinates me, and that’s the distinction between wanting to be pregnant versus wanting to be a parent. I don’t think I realized there could be a distinction until recently, and maybe there isn’t for everyone…but when you’re weighing what’s best for the mother and what’s best for a potential baby and what’s best for a family, I think it’s a relevant one.

In terms of the “can versus should” question, I wonder how many women prefer adoption? Is chronic illness an impediment to adopting, or does showing your conditions are under control suffice?

It’s an exploration that’s been on my mind ever since I wrote this Salon.com-inspired post about choice, and I think this angle is a natural extension of any talk about children and chronic illness.

I realize these are deeply individual choices, ones tied up in personal preference, disease progression, risk tolerance, religion, economics, and health insurance, to name but a few of the factors. There are no easy answers, and there are no “right” answers. Not everyone can afford to have help with childcare, not everyone can afford medically intensive pregnancies or to not work during high-risk pregnancies that require bed rest, and not everyone who would like to can afford the cost of adopting or having IVF.

(I know adoption and IVF are expensive regardless of existing health status; I’m merely focusing this discussion on people who are considering these options in conjunction with chronic illness.)

I guess in the end the variables and “can versus should” deliberations boil down to a different consideration altogether: how to be the parent you want to be when with a body that doesn’t cooperate.

So, if you’ve been through this, are actively discussing it, have plans for parenthood down the road, or became sick after you had children, please chime in.