Wednesday, January 06, 2010

Color Me Riled Up

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.)


Stephanie said...

This is an amazing post. After a great deal of infertility treatments and dealing with PCOS I had my daughter 10yrs ago. For about a year after I had her I became nearly dibilitated, after tons of Drs and Pain managemet I was written off as possible RA, Fibromyalgia and degenerative disk disease. I went into a type of remission for 2 yrs. I was fine I felt great I was my old self again. 3 yrs after that I had my twins with no treatment at all. I have spent the last seven years on a downhill slope and now it is highly suspected that I have MS ( my appointment with the specialist is Friday). I have days when I go back and forth I work so hard to make sure that my kids lives are not defined by my illness. I love my kids and they are happy. Now if I would have know 10yrs ago that I would be an MS patient and that my life would change drastically I am not sure what my decision would have been it probably wouldn't have changed because from the time I was a child the one thing I always knew I wanted to do was be a mom. I work twice as hard as most making sure that my kids enjoy life, make the most of everything and don't take one minute for granted. I speak openly with them about my illness I answer their questions an I do my best to calm any fears they have. In some ways I think I'm a better parent because of my illness becuase I know better than some that your whole life can change in a flash so all you can do is live each moment as if its your last.

Never That Easy said...

I wish there were a way for my comment to play a sound clip of applause after people finished reading your post. Of all the issues I have to deal with because of my chronic illnesses, this is the one that is the most complicated for me (and, tangentially, the one I feel least able to discuss with anybody, so far).

But while my personal choices and decisions are fraught with difficulty and complications, I feel no such compunction about declaring the attitudes & policies you mentioned in this article to be harmful and archaic. To everybody - there are a lot of chronically ill people who would make fabulous parents, but who are deemed ineligible to adopt. There are a lot of kids who need great parents, but who can't access them. There is more than one couple dealing with a chronic illness (or 2 or 12) who are trying to decide whether or not they should be parents, or how they could be the type of parents they most want to be, and who don't need hateful, abelist, and uninformed comments on their decisions.

So: Glad you're feeling well enough to get on your soapbox about this one, it is definitely worth it.

Helen said...

Thank you for this.

I live with rheumatoid arthritis as well as an inherited, potentially fatal (but treatable) heart condition that I have a 50% chance of passing on to any children I may have.

Pregnancy and parenthood have been on my mind a lot lately. Thanks for echoing some of my fears and letting me know I'm not alone - and that chronically ill people can still make great parents.

Remicade Dream said...

Thank you for this. I was diagnosed with RA and learned that I was pregnant the same week, so it was a done deal at that point. But we are considering a second child. I've wrestled with the issues, especially the "quality of life" issue you bring up. Thank you for reminding me that this is nobody's decision but ours, and that my husband and I are ultimately the best judges of whether we feel we can handle having another child. It's good to remember that the answer isn't automatically "no" just because I have an illness.

While we are still weighing all of the factors, I think we're leaning towards trying. But our personal decision is that if we don't conceive naturally, we won't do IVF. This is because, as you pointed out, it's a very complex and difficult thing, not like "getting a flu shot," and I think we're just not up for it. But if someone else in my position made the choice to try IVF, I would be completely on their side, and hope for the best possible outcome for them.

And while I sometimes feel bad because of the things I can't do with my child, I give him abundant love, and I think that by being honest with him about my illness and its realities, I will be raising him to be a compassionate person.

Lyrehca said...

If this were Facebook I'd press the LIKE button for this post.

Laurie said...

Thank you for the feedback, everyone. It's helpful for me to hear from people, because this was a tough post to write...too many ideas/emotions to try and navigate.

Rosalind Joffe said...

When I became pregnant 26 years ago,I heard the negatives-- pregnancy would make me sicker(I have MS),the disease is genetic,sick parents aren't good parents.I ignored it all. The early years were very tough physically but I never doubted this was right. I can't blame any lapses in parenting skills to disease :) I made it clear that everyone has challenges in life. We're no different.

Our daughters are grown and so far, helathy.My niece and nephew have Ulcerative colitis (which I developed10 years after MS)and there's increasing research about genetics in this. Should my sister not have had chidren because of me?

I hear this concern from many of my clients-all with chronic illness. Working with illness is tough enough to figure out but having children? These are tough decisions but fear is not a healthy deciding factor.

Unknown said...

Laurie this is great (and these comments are great too!)
My biggest concern is that while I hear these discussions happening in the "physical medical" community, chronic illnesses such as MS, celiac, cancer, heart disease, asthma.... all potentially limiting a "childs happiness/normalcy" or "parent's ability" etc etc.... are these conversations being had in the mental health community as well? are we having conversations about breaking cycles of abuse as children of abusive parents/families/communities grow into childbearing age?
what does that say about our ability to NOT discriminate against folks with potentially (and not always) outward disabilities? invisible disabilities are a huge issue all their own. and i agree, every issue wrapped up in here is so intricate and complex, AND individual. thank you for sharing this poignant and wonderful view. said...

Thank you! I've lived with chronic illness my entire adult life. (Health problems actually started about age 8, but we didn't put the pieces together until later as I didn't become so obviously debilitated until age 18.) We spent 10 years dealing with both primary and then secondary infertility, had 7 adoption attempts fail (sometimes directly related to my health), lost 3 sweet babies to miscarriage, and have 3 amazing living miracles at the end of the story.

They are 10, 7 and 4. My health took a significant turn for the worse when the youngest was just a year and parenting has been VERY challenging since them, but I'm sure if you asked any one of them if they would rather have not been born than to have a chronically ill mom, they would all agree that they are happy! We have to adjust our lives differently than many families (wow to your parents!!!) but we still have an amazing life and my life is so richly blessed by these little people - it was well worth the struggle to get them here and the ongoing adjustments to parent them well!

layne said...

Thank you so much for writing this. As a chronically ill mother, my first question at my first prenatal appointment was when I would like to schedule an abortion. There was no data at that time on pregnancy with the relatively rare disease I have, so more than one ob/gyn assumed it was not worth the risk. It took a few months to find a supportive doctor, and then it turned out that pregnancy actually calmed my symptoms and may have prolonged my life. Which is great, but if it had done the reverse, my daughter would still have been worth it. I love being alive and even if my kids had a 100% chance of being sick too, I would not want to deprive them of the chance to enjoy life. Is it hard? Yes. Have I heard a lot of ignorant crap, sometimes from people who know about my illness and should exercise some tact? Yes. Was it worth the risk? Without question. Being sick does not make a person any less likely to be a good parent. I know of plenty of healthy people who never had to face this prejudice and yet went on to abuse or neglect their kids. If anything, knowing that I may be too sick to enjoy them as often or long as other mothers makes me more motivated to make the absolute most of every minute I have with my kids.

Kairol Rosenthal said...

Laurie -

This post should be circulated widely - it is excellent.

I especially appreciate the realism that when you are living with a disease, you are often barred from adopting children. When writing my book on young adult cancer, I was disgusted by how many resources and organizations there are for young cancer patients who want to jump through fertility hoops to have their own children, but so little consideration or support is given towards those who want to adopt.

Though my book is for cancer patients, most of the resources translate to anyone living with chronic disease - including this - the only resource I have found for adopting w/ illness: Don't let the fact that it is a yahoo group scare you. There is fantastic info. here.

I need to play devil's advocate, or at least present the other side to some of your points. You and most readers on this site are uber educated, proactive, and aware patients. But through my work interviewing a wide range of patients, I have met many patients who are not. I have met patients who are so swept up in the thought of raising a child that they have never considered that their illness will impact how they parent. I'm not making a judgment here that they should or should not do it, or that they will be good or bad parents - obviously your parents did an incredible job of raising you. I do think, however, that it is important for people to have open and honest conversations with their partners about how parenting will be different for them because of an illness. These are real considerations that some patients are not planning for or talking about. I have read comments from women with chronic illness who didn't have these conversations and later regretted having a baby. (Talk about a taboo subject!) Yes, it seems impossible that someone could have not thought about this beforehand, but it happens.

So asking in a kind, open way about how someone is going manage their illness and childbearing and rearing is in my mind kosher territory. A flip comment at a cocktail party is a no go. But the root of the question, is a valid one. It is all in the presentation.

And, should all potential parents be asked this question? Am I discriminating against the chronically ill? Yes, all parents whether ill or not should have realistic conversations about what it means to have kids and how it will alter their lives. Some people think it's crazy that parents wanting to adopt have to jump through so many hoops to have kids - I think it is crazy that we don't make everyone jump through these hoops. There are a lot of serious considerations that go along with having kids and unless you are ill, our culture just glosses right over them.

All my best to you.


Shiri said...

Oh Laurie, thank you, thank you, thank you. I can't say anything more insightful or articulate than the other commenters have, so I'll leave it at this: constant internal monologue #2, thank god.

Jenna said...

Thank you for acknowledging me and the ethical implications brought up by certain agencies. Internet high five for that!

Aviva said...

Wow -- brilliant post. And great comments. I often question whether I would have had a baby if I'd already had my life-changing chronic illness.

My hope is that my daughter remains as healthy as she has been for her first 5 years. And that when she looks back on her childhood, she knows that I did my best (as you do about your parents).

I think parenthood is challenging for everyone, and that doing it with a debilitating chronic illness is even harder. But it's also the most rewarding thing I've ever done, and I wouldn't change it for anything.

Anonymous said...

I feel somewhat lucky that I never really felt the need for children, even when I was comparatively healthy.

Knowing what I do now, that any child genetically mine would have a 50% chance of having my primary illness and a harder to measure but definitely there chance of having my other conditions, I couldn't do it. I couldn't knowingly create another person who would have the pain and struggles I do.

That's not to say that I fault people who make that choice. It's that I would be so wracked with guilt that I would be miserable, and probably make that child miserable.

I know plenty of people, including some of my second cousins, who have parents with disabilities and have happy, fulfilling childhoods. It can definitely be done.

As things have fallen out, my health is bad enough that adopting isn't an option for us anymore. At one point, we were seriously considering adopting my nephew a year from now (when I was due to be done with school). That was back when we thought I'd get better. Now that we know that my 'better' isn't what I'd consider good enough to manage a child...well, we love my nephew and we spend time with him, but my parents raise him. We're hoping to move back cross-country to where they are in about 2-4 years, so that we can spend more time with him as he grows up.


James Kildare said...

You are now talking health reform will be changed soon; we trust that Obama and his staff do what is necessary for the welfare of families. This reform must be appropriate because many families depend on it, the health system a long time that is weak and patients suffering from cancer, chronic fibromyalgia, rheumatoid arthritis, Parkinson's, diabetes, chronic pain, chronic anxiety among many other diseases, Need proper medical attention, according to the measure should be findrxonline for 80% of patients with these diseases.

Laurie said...

Thank you, everyone, for your continued feedback and insights about all of this. I agree with you, Aviva-there are some great comments here, and it's such a worthwhile conversation.

Kairol, I totally agree with you, and don't think you're being the devil's advocate so much as extending a really important point about parenting and illness. When I interviewed patients for Life Disrupted-and in reading a variety of patient blogs--I was/am struck by how many young people are already thinking about pregnancy and children. These are patients who are still in school, who aren't in relationships, etc, but know these realities will likely be theirs someday and want to start planning and thinking about them now.

But, as you point out, not everyone who needs to think these proactively and realistically does. That's why I value the comments and feedback on all of these pregnancy-related posts (the occasional series, if you will) because readers who have been there and done that can provide the input and nitty-gritty truth so many don't want to hear.

It's frustrating to me when people get so hyper-focused on bringing a baby into a family (however that happens) without allowing for all that will happen once that child is here.

Annie said...

As someone new to this blog, who has chronic illnesses, I am enthralled.

It is beyond informative.

Thank you for A Chronic Dose :)



Mandy said...

What a great post. I have pushed thoughts of reproduction to the back of the line since my RA diagnosis. I just don't want to deal with that question yet. Thanks for making me aware of some of the issues and being so honest.

Lately I feel like I could write a book on sleep and RA! After using a ChiliPad to help with my RA symptoms I decided to work with ChiliTechnology to promote it. The ChiliPad is a mattress pad that cools (or heats) any bed. They come in all sizes, they work using water, and they're small and efficient. I used to take Lyrica because the pain in my hips would keep me up at night, and I wasn't able to do much with my mornings because of the stiffness. After playing around with the temperature I finally found a way to sleep through the night: heating up the bed a bit and then setting the timer to cool it down in the few hours before dawn is what works for me, I both sleep through the night and am able to do more with my mornings.

Anonymous said...

I have several illnesses one of them is terminal(I could live for only two more years or I might if I am one of the few lucky ones, live another ten years) I first became ill when I was pregnant with my youngest child. Illness and chronic pain have affected my life as a mother in different and opposing ways. Because I was ill, my ex husband was made the custodial parent and moved my children far away for several years. But, also because I was ill the man who I was in a relationship with after I was divorced,(now my husband) brought me into his house and when I was no longer able to work, took over the financial support of my children and I had years when the children were still young in which I was able to give them time, love, attention, travel and so many things that I had not been able to give them when I was working and having to support the entire family.

I believe in karma so I feel that every thing happens for a reason. I know that most people have the best intentions when they point out what seems to be the obvious reasons why someone who is chronically ill and especially someone who has a terminal illness should not consider having a child.

But no one can predict how things will turn out.

That also goes for women who have children when they are too young or too old or for whatever limitation a woman may have that might not make her a good parent.

My daughter got married too young. I knew she was too young. Now she has a little boy is expecting another one and is getting a divorce. My daughter has often made things difficult for herself in the past but she has turned out to be a wonderful mother.

As for myself, I still haven't given up on the possibility of another child. I've been through IVF and DE neither worked but we are still looking into possibilities of having anoother child. I've learned to not worry about what other people think I try to always have good intentions and try to do what is right for me and the ones I love.

Genevieve said...

I was told due to endometriosis that my husband and I would never conceive. We tried for 13 years and gave up. Well, I figured it was for the best considering I battle Bronchiectasis and Atypical CF. I wasn't sure my body could handle pregnancy let alone taking care of a child full time once it arrived. Unexpectedly I am now pregnant, totally unplanned. And it's frightening. The Father is not a carrier of CF, so the Doctors are looking at that as a very positive thing. I've been on medrol for 7 weeks due to junk in my right lung and inflammation, no infection this time~ just Bronchiectasis flare up. I'm really concerned about the effects of Medrol on baby. Hoping for the best.

Dana Asmara Morningstar-Marton said...

I read about your new baby girl, and I for one am giddy with joy for you! You should be so thankful! I am writing this with tears in my eyes actually. I went to this article to go back in time. I think when I read this about chronic illness and parenting, while we are going through adoption, it hit home!!!! Not close to home, but home! We have been trying to adopt for 6 years--through agencies, the foster care system, and now (hopefully finally) through a facilitator out of California. For me, pregnancy isn't an option. I believe adoption or surrogacy are our only 2 options. Although we did discuss the passing on of genes issue, our main concern is that my joints are too bad for me to carry a child through pregnancy, and with my many auto-immune diseases, I put my baby and my own health at risk. We cannot afford surrogacy at this point in life b/c of all the money we have put into adoption. We didn't really know about the option of surrogacy until about 6 months ago except what they show in the movies, which seemed awfully scary to us, and so we never looked into it. Our adoption attorney introduced us to it. We may choose it for our second child--when and if we ever get to a second child. I am turning 36 next month, and my hubby will be 37 soon. I pray everyday for a miracle b/c we know we were both meant to parent. I know there are many biased opinions about people with chronic illnesses, and I wrote a post for a blog carnival on parenting w/ chronic illnesses. I pulled the post very soon after the blog carnival went live b/c of the response to it. I was very honest about every part of adopting with a chronic illness, how you have to appear healthy and active, show a profile without my cane, and basically prove that we can parent to the social worker who comes to the house for the home study. She basically saw me as "chronic illness" and not as Dana. That was hurtful, but when I posted it, I was ridiculed and called a liar, and treated as though I didn't deserve to parent. We will not give up, but 6 years is so long, and many days I do feel defeated. I did not want to bring you down with your happy homecoming with baby! I truly and honestly am so happy and over-joyed for you! It makes me feel hopeful that we will receive that call soon! Thanks for the post about parenting and your new post about giving birth to your beautiful baby girl!
Love, prayers, and blessings,
Dana Morningstar

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