on pondering parenthood with chronic pain

This is a topic I’ve been avoiding like MSG.

Okay, here goes.

pondering parenthood when you've got chronic pain

I never thought this question would require pondering. Up until the past year or so, I was pretty confident that I wanted to be a parent, and more specifically, that I wanted to bake my own, give birth, and send a bundle of my genes out into the world with my heart tied around its ankle. I thought I’d be pretty good at it and that it would make my life more full in a good way, not to mention increasing my chances of having visitors when I’m old and decrepit.

Now I’m not so sure.

I don’t need to tell most of you that chronic pain is a life changer. As is demonstrated by my treatment plan, managing it well usually means adjusting every corner of daily life, from seemingly innocuous things such as going to bed at the same time every night, to major things like navigating a whole new career path. This is just another decision in a billion that I will make while living with chronic pain, and one that I am incredibly fortunate to make. But it’s still a hard one because, infuriatingly, there is probably no right answer. So naturally, a pros and cons list will be required.

Perceived parenting with chronic pain pros:

  1. I know a few folks with chronic pain who are also top-notch parents, both single and partnered, and I firmly believe that excellent parenting and chronic pain are not incompatible. This is reinforced by the oodles of blogs out there that chronicle the lives of some pretty bad-ass, determined, and loving parents with chronic pain who find endlessly creative ways to manage family life when pain limits their abilities.
  2.  Not only do many parents with chronic pain do a fine job, they sometimes claim that the joy of little ones helps to get them through some of the roughest times.
  3. I am of the mind that “it takes a village,” and am fairly confident that I could organize friends and family who would be willing and able to help out so that not all the responsibility would fall to my partner on major pain days.
  4. Life is unpredictable, and abilities change. Even if I were making this decision without chronic pain, my health would be no guarantee. Because shit happens, having a parent with an invisible disibility would probably be a learning opportunity on many levels.
  5. Despite the potential tribulations, I can’t imagine ever regretting the decision to become a parent, whereas I can imagine regretting the decision to abstain.

Perceived parenting with chronic pain cons:

  1. I feel as if my plate is very full already with doing my job and taking care of myself, and I can barely commit to the responsibility of feeding a friend’s cat, let alone carting kids somewhere on any given day. Having to cancel plans due to pain already feels crappy. I am guessing that having to cancel a child’s plans due to pain would feel even worse.
  2. In the imagined scenario where friends and family help out more than in the traditional nuclear family, I may not be able to return the favour, at least not by giving my own physical energy, and would really be quite dependent on the generosity of others. I’m not sure how I would avoid/deal with the guilt around this.
  3. Parenting would likely mess up my treatment plan pretty often. Lack of sleep and noise levels in particular are two of my biggest triggers. A kid might mean worse pain more often, which usually means a tougher fight with depression. And while I know healing is not linear, that would just be hard.
  4. Migraine is thought to be passed on genetically. If I baked my own kidlet and they ended up struggling with migraine, I suspect that would also be very hard.

Lucky for me, while this topic might feel heavier some days than others, I’m in no rush to decide and neither is my partner. My biological clock has taken a break from cats-turning-into-baby dreams, and having come an agreement with my incredibly demanding, change-despising body, I’m open to the idea of adopting later in life. For others, despite recent debunking of the dramatized “fertility cliff” of 35, I know the ticking of the clock is still a source of constant worry.

People with chronic pain who are parents, parents-to-be, undecided, and decidedly childless, what are you thoughts? What pros/cons have I missed?

Anna

22 comments

  1. Wise child. I can’t imagine life without you.

  2. I don’t know how my boys play into my disease management. I don’t think it’s that ‘neat’. Motherhood has given me strength that I didn’t know I had and helped me to fight for my life when I didn’t want to keep fighting. A few times I know that if it were just me, I might have given up. It’s not about self-worth or self-love, just about a breaking point. My kids carried me through. I also know their lives are very full and very rich because I do actually seize the day. I know life is a precious gift and that we are fortunate to have so much. I don’t know yet if they are affected by my illness. One of my sons is incredibly perceptive and I wonder if his behaviour is a result of fear of losing me, or maybe he’s just going through a jerk phase! I know that life is amazing with or without having your own children and that there are lots of kids in the world that need caring adults. There is no right answer and no wrong answer.

    1. Thanks for the insight!

  3. Good post! 🙂
    I think that parenting w/ chronic pain has allowed me to examine my views toward ability and who gets valued in this way so much more than anything else in my life. My children and I have convos about disability, about allies and about equity – we talk about it because it is present in our lives, and as such I believe I’m doing my part to crank out some conscious, considerate members of the next generation. It is pain that brings that reality – I can prepare them for the realities of racism and classism, but dis-ability lends itself well to discussions on how we value humans in this world. At least for kids I find it does…so, we talk about it! And my almost 12 year old can break it down like it’s nobody’s business at this point…the 4 year olds read books and talk about compassion and that in any moment someone might be having a hard time.

    Definitely the hard days are plenty. There’s too much noise, and I use strategies like “omg mommy needs to put a movie on so I can soak for an hour in the bathtub in silence” much more often than I imagined. And the amount of support needed is plenty. And I cannot physically return the exact same favours, but I can offer different ones. Like playing with us in our home, or coming to visit us and having dinner or a phone chat sometimes. I must shift how I value what I have to offer in return.

    And, at the same time, there’s of course no right or wrong answer – and that it because it’s the individual’s to make! 🙂
    Being a rockin’ aunty, kid friend, or whatever name one chooses is also super amazing.

    That’s my two cents! Thanks 🙂

    1. Thank you Stacia!! Your two cents is worth a million. The part about shifting how you value what you can offer in return is something I need to work on. So many wise words here. If I do decide to have kids, I hope you don’t mind me knocking on your door. I’d love to hear some book titles that work for your little ones on the subject of disability sometime.

    2. Thank you for your comment. It gives me hope for my imagined future with children and two chronic pain conditions!

  4. Anonymous · · Reply

    Beautiful Anna,

    Indeed “it takes a village to raise a child… noone can do it alone…”. It takes great courage to admit this let alone to put oneself in way of vulnerability and dependability on others. Yet, in my humble opinion, this is THE BEST WAY to raise a child. Show them that we need each other, we depend on each other for everything; that we’re all connected in the larger web of life, the web that we did not weave, but are merely a part of (This We Know;)

    The most resilient kids are those who are included in the day to day challenges of every day life.
    I want kids and a future generation who is compassionate and feels empowered to make a difference in the lives of others. It’s the only things that has ever mattered. How do we raise such kids, if they have never seen trials and challenges? We are raising a narcissistic generation because we have been led to believe that our self centeredness, immediate and material needs run this world; at at the moment it is!
    As a result, WE are the very beings that are killing Earth that sustains the LIFE that we treasure.
    Talk about paradox! Heavy? yes. Infuriating? most definitely! All the more reason we need voices like yours showing the world that there is another way…

    This society needs your example and VOICE to be a light for all those who feel suppressed (even if just temporarily). Your struggle is debilitating at times, but IS NOT powerless, quite the contrary. YOU ARE THE VOICE of all who have ever felt weak or with dis-ability. How blessed your children will be to carry with them your guidance and example of STRIVING; because isn’t that what all of life is? a striving for higher ground? childhood is blissful, yes. But not without upset. The challenge is how do ride that wave? This is the striving. That you and your family will work through and will be all the most strong for.

    My children are 6 and 10 and I will very soon share with my eldest the specifics about my mother (one of their primary care-givers) and her husband. Both are bi-polar and one has schizophrenia. For the past 10 years these disabilities have worked their way in and out of our lives sometimes daily, sometimes weekly/monthy. I firmly believe our working together and caring for one another, us reaching out to our wider community, neighbours, church family, friends etc. has TAUGHT US ALL what BEING HUMAN is really all about. These are the relationships that will carry us and our children through the many beautiful trials of life and gives me hope for a future of reconciliation between us and Mother Earth.

    Your Friend,
    Monica

    1. Hi Monica! I can hear your lovely voice in this. Thank you for sharing part of your story. Interdependence for the win!! I hope you and your family are well. Love from Toronto 🙂

  5. You know we’re here for you no matter what you decide. And don’t worry about “returning favours”. I’ve learnt that every parent does the best they can – and its different for everyone. We need others to help. I couldn’t do it without you and Ben with Atticus, I really couldn’t. I don’t know how to return the amazing favours you do for us, I just am thankful to have you.

    1. Best! Thanks Lori. This means a lot.

  6. Again you articulate your feelings so well.You will make the best decision for you. You will supported in whatever you decide. I was not able to have children and look what I ended with. Two great humane beings.

  7. lynnesherman · · Reply

    This probably won’t be very helpful, but your post brought to mind my own mother, who suffered from chronic migraine, worked full time, and raised 7 kids. In a sense, she created her own village to raise the younger ones. I rarely saw my mother growing up, as she was either working or down with a migraine. My sisters were my mothers. So one very scary solution is to have/adopt plenty of kids so they can look after each other when you’re down!

    Seriously, though, it is entirely possible to rear children while suffering from chronic pain, and as others have pointed out, children do understand and accommodate disability. We walked softly or left the house when Mom was shut up in a dark room with a cloth on her head. And I totally got it, as I suffered from migraine as a child thanks to my mother’s genetic gift. The gift that keeps on giving, as I still struggle with the accursed things some 55 years later.

    The point is-if there is one- I never blamed my mother for my migraines any more than I blamed my father for my blue eyes – just the luck of the genetic dice roll. So, yes, you may pass on your migraines, but you will also pass on beauty and brains and love of music and animals and on and on from your own sweet self. Not to mention other hidden genetic treasures from your parents and grandparents and the odd Neanderthal! So go boldly forth, Anna, and reproduce, adopt, or remain childless as you choose.
    You pass on the beauty of your soul whatever you decide.

    1. This is very helpful (except,bI don’t think I’ll have seven children…wowzers). Thanks for your encouragement and sweet words. I might have to use that last bit in a personal art project to serve as a reminder.

  8. HI Anna, I want to thank you so much for visiting my blog, because it has led me here, to your wonderful blog! And of course, the first post I see is something I have been struggling with every single day since my most recent “flare up” of chronic migraines in Sept. 2011-Current and my “flare up” of trigeminal neuralgia every day since Sept. 10, 2013… but hey, who is counting ;)!

    I have always considered my dream/life goal to be having a family. I was one of those little girls whose favorite game was playing house and Mommy. I used to tuck all my stuffed animals in each night, under dishcloths and paper towels, pretending they were my own little dumplings. I had a mini baby carriage that I would push around, pretending I had a family of my own. So my struggle with chronic pain (and the daily medications I am on, which currently prevent me from “baking my own”) is very emotionally difficult in this regard. I face the question of IF I could be a PROPER caregiver to mini blends of me and my husband. Adoption is definitely something I WOULD do, if I had to stay on all these crazy medications – however it still leaves the questions of “can I be the provider I WANT to be? Will I be able to handle the daily needs of adorable children, if I can’t currently care for myself well?” I can’t even work right now because of the hourly, excruciating pain of my trigeminal neuralgia for the past year and half (and many flare ups in the 9 years since my first diagnosis), and my past history of 3 different “year-long headaches” and the my many hiccups of mini-headache flares stretching anywhere from 1-3 month. I am laying out my pain information so you have some background, not to complain, or compare. I just want you to know you are not alone in your pain, or in your questioning parenthood with chronic pain.

    I have found the comments on your site to be very encouraging… but the fear remains, because I don’t know if I am as “strong” as the people commenting. My biggest concerns are not being able to fully participate in my children’s lives, of being an absent parent, of putting all the caretaking onto my already heroic efforts of my husband, and the general fear it will be just too difficult to for me to manage my pain and precious little lives. I am afraid HAVING children will be very SELFISH of me, because it is a blind desire, and not rooted in the reality of “is the right choice for me and my husband… and my infuriating pain issues.”

    I am not sure what the point I am trying to make is – but I am sure that I am so grateful for your post. I can barely speak the possibility of NOT having children aloud, let alone sharing it with others. Thank you for your courage in opening up in regards to such a vulnerable, important challenging choice so many of us face. I can’t wait to read what else you have written, and to follow you on your blog/life journey.

    Best,
    Liliit

    P.S- in terms of passing on the genes, don’t worry. My mother is a chronic migraineur and hemicranial continua. She is constantly APOLOGIZING to me, for “giving” me this pain. I always try to reassure her it is OK, and in fact RIDICULOUS for her to apologize to me. I Love my mother dearly, and I don’t for a second blame her for her genetic makeup, nor wish I had inherited anything but the genes I have from her. I am so fortunate to come from WHO I came from. I wouldn’t be me without her, lol. The point is, I think the majority of people feel this way about their parents. We are happy to take the bad with the good. It is about love, not blame. People are grateful for life. Speaking from experience, I would rather live in pain, than never have existed, for I cherish life (difficulties and all).

    I hope all of this rambling made sense! Eeek.

    1. This all sounds so similar to the gears in my brain as well… Although I didn’t post about it, the question of selfishness has come up. I think I would need to be sure that I have an adequate support system in place… Being “absent” sometimes is not something I worry too much about, especially since I imagine talking this through with a kid so they get it… But having all of their needs met, and the needs of my partner are the things I worry about! Best of luck to both of us with this tricky decision. Stay in touch 🙂

  9. I keep coming back to this post over and over again, and at least three comments have been eaten because I have taken too long to post them, but I wanted to say that this post touched on one of my saddest, deepest fears, and gave me lots of hope at the same time. Not only are we not alone in these fears, but there are women who have blazed the way for us if we so choose to become parents with chronic illness. I have several unpublished pieces written about my dreams and fears relating to children in my future, but they will remain unpublished for the time being. I have always thought I would find a way to be a mom, no matter what, and I still feel that way, but there is a little weary voice saying “but what if you can’t?” every time I talk about babies now.
    So glad to be a part of such an encouraging community of insightful spoonies. Every response here filled me with more hope and self-compassion. All of you ladies are wonderful!
    I’m so thankful you posted this, as it’s a discussion that hits the very heart of what it means to live with an illness or disability. I’m grasping for useful things to say right now, but I am so full of fears, hopes, uncertainty and more uncertainty surrounding this topic, and all the responses before me were brilliant.

    1. Hi Jessi, I’m glad to hear about your reactions to the post. It’s got more attention than any post so far, and I had no idea it was such a hot topic because there seems to be very little out there on making the decision. Perhaps this is because it is so personal, and often highly emotional. Anyway, I’m so glad I put it out there because of the wonderful encouragement and the plethora of responses letting me know I’m not alone in this. Now I’m dreaming of chronic pain communes with co-parenting situations… I’ll get on it, right after I figure out my new career plan… ha. Lovely to hear from you as always.

      1. My heart skipped a beat when I read “chronic pain communes” 😀 Yes please! I talk to another girl I just added to the Changing the World group, Rebecca (who is looking for talented, awesome, creative people like yourself to interview!!!! You should totally do it, yours will be so much more interesting than mine with the spoonie selfie challenge and everything else awesome you have been doing over here.) anyway, Rebecca and I are always imagining this village where everyone has a disability and we all help each other and there is never a challenge so great that we cannot solve it as a group, and doctors, therapists, and nutritionists are every five houses on the block. I think it’s our two-person version of meditation.
        I want to let you know that I value your blog and your words of wisdom and friendship so much. If you hadn’t written this I would not have had the courage to post what I just wrote about dating/partnership through chronic illness and pain.
        Pregnancy, parenting, and chronic pain are emotional topics, but when we are honest with each other about the fears and sadness, it’s surprising how many voices will chime in to show us how the impossible is possible, but that it looks different than we used to imagine. Not worse, just different. Thank you again for making it possible for me to see more positives in parenting with an illness.
        I want my child to grow up surrounded by truly caring adults who engage and nourish him as well as provide him another viewpoint on the world. My boyfriend and I both try to be that for our godson, and already he is starting to dislike strangers, but he screams for us to hold him and will not sleep while we are over so I know we made it into his inner circle of people he will trust as he gets older. Just watching someone my own age (younger actually) who had not planned this and who has severe anxiety/ptsd, grow and become such a beautiful, loving, and intelligent parent, has soothed many of my fears, other than the ones directly related to my genetics, my terror at the chronic illness separation rate, and pregnancy and childbirth itself, which I know will be rough (and then some). I am wondering if finding someone (preferably my godson’s wonderful mama) to be a surrogate for me is the safest, best way to become a parent. It seems like cheating, but she does everything right and I trust her so much she’s the only person I would consider a candidate right now. Other than adoption, which also I a major, major, major coal of mine, it’s kind of the only way I see me becoming a mom, with the way things are right now. Still though, I am trying to get off the meds with the goal of pregnancy in mind… just a lot more to figure out than that!

  10. My mother has suffered from chronic migraines her entire life, but also had to work full time and take care of three children and do a lot of housework. This led to me taking up a lot of the responsibility for cleaning, cooking, and looking after my younger siblings and my sister took on some of that role after I left home. My relationship with my younger siblings was damaged by this dynamic and I only began to develop real, healthy relationships with them in my late 20s. My sister’s relationship with my brother has never recovered. I was very angry at my parents for this additional responsibility.

    We lived in an isolated, rural area with little money. What few plans we could make were often disrupted or cancelled due to my mother’s health. We resented her a great deal for this and often tried to use her guilt against her to get things we wanted.

    I also developed chronic daily headaches around the time I began elementary school which slowly transitioned into chronic migraine by the time I was finishing high school. My mother was unable to advocate for me in the medical system due to her own health and my father believed I was faking my health problems. While still a young teenager, I was going to doctor’s appointments alone and crying. I did not begin to receive appropriate treatment until my late 20s.

    We modified our behavior a great deal when our mother was sick and often took care of her.. When I was very young, I could not understand what was happening and thought she was dying. I had nightmares for most of my childhood about it. We found taking care of to be a chore, an annoyance, just part of life for the most part.

    I know all that sounds terrible, but despite all that, two of us are in great careers, I’m doing about as well as a graduate student can do, two of us are in happy long term relationships, and all of us have a strong relationship with our mother. I think it’s really hard to be a parent and being sick makes it that much harder, especially if you don’t have a lot of support. But even if things are really bad (and I left out a whole lot of really terrible things unrelated to my mother’s illness….), if you love your kid to pieces and let them know and get them to read a lot of books, things will probably shake out ok.

    1. Thanks so much for your candidness here. It sounds like this was really hard. Sorry you had to take on a parenting role so young. A reminder that (if possible) having a community of support is really important!

  11. Hey, I know that kid! So, I have take no time what so ever to look this up, because, well, im lazy! But I wondered if there is any research out there that has looked at how a pregnancy can effect migraines. I have had several clients who suffer migraines, more or less seriously, and none as serious as you. BUT they have almost all had their pregnancies effect their migraines. For some their condition worsened. For a few their condition totally cleared up, no migraines at all while pregnant, but went back to their old normal once baby arrived. but for one of my clients, her pregnancy completely stopped her migraines. None during pregnancy, and they didn’t return after either. She was breastfeeding, so her hormonal levels would have been different from her pre-pregnancy levels and would have eventually gone back to her old normal. I don’t know if the migraines stayed away, or returned when she stopped nursing. But like I said, is there research on this? I good ol’ story of “this lady from down the road cured her migraines with a daily snack of cat hair (or what have you)” is all well and good, but science its not. There ya go, this is what I have observed, go forward and research, tell me what you find. LOVE ya.

    1. I haven’t tried a daily snack of cat hair yet!! There is research on this that pretty much mimics your small-study findings… The migraines change for most pregnant ladies, either for better or worse. If better, they usually come back full on after the baby comes (which sounds like no fun.) There’s not enough research (as with most drugs) about what’s safe to take during pregnancy either, so that’s kinda sketchy. p.s. Thanks for letting me steal a picture of that kid and put it on the internet! Xoxo

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