Nulliparous: of, relating to, or being a female that has not borne offspring. New Latin nullipara, one who has never borne an offspring, from Latin nullus not any + -para -Latin, from parere to give birth to.
One night in April 2001, at the age of 25, I went to bed with clear skin and woke up the next morning surprised to see a face full of acne staring back at me from the mirror. Once I checked the calendar to be sure I hadn’t somehow unknowingly ridden a time machine back ten years to the glory days of grunge (Grunge, if you’re reading this, I’m still totally bitter about you knocking my preferred type of pop music from the airwaves!) I puzzled over what this could mean. First I bought new makeup. Then I changed my moisturizer. Next I bought some benzoyl peroxide cream and promptly bleached all my purple washcloths a blotchy orange. After a month or so, none of this having helped, I started making doctor’s appointments.
After a few wrong turns, including a dermatologist who dismissed out of hand that my acne could be hormonally motivated (my very first experience with a useless doctor!) eventually an endocrinologist deduced that I’d developed polycystic ovary syndrome, and that I was carrying around about three times the normal amount of testosterone for a woman. Thus the acne and my newfound ability to clean-and-jerk filing cabinets.
I didn’t have all the signs of PCOS, but I had enough. And it made some things about my personal health history suddenly make sense. Now there was an explanation for the fact that my uterus had always been as much of a procrastinator as I was! She had always had an “I’ll have a period…when I get around to it” sort of attitude. Frankly, that suited me fine – having fewer of them, at longer intervals than any of my girlfriends did, had never seemed like a disadvantage to me. Now my gynecologist was telling me that if I wanted to have kids, I had better get started sooner rather than later. Even though the tests showed I was ovulating, it was possible, she said, that I might have trouble conceiving. But let’s step back from 2001 for a moment.
When I was a kid, I was not really into baby dolls, besides an occasional interest in the ones you could put water in one end and get out the other and the obligatory participation in the Cabbage Patch Kid craze required of all middle-class children in the 80s. Baby dolls were boring. Barbie was much more my speed – she had an awesome wardrobe and a range of cool jobs, and Barbie was whom I wanted to be like.
As a child, when I looked forward to when I would be grown up, I thought that I’d have a great career and maybe I’d get married. But the idea of kids – it just seemed totally foreign to me. While I did plan to have pets as an adult – always an animal lover, I wanted as many cats as possible – looking into the future, I couldn’t imagine myself having kids. Once I got to the age where there there was some risk of it, I still couldn’t imagine it and I was pretty well terrified of it happening. Well, probably most of us were a bit petrified of it at the age at which it would not have been the done thing in our social circle – but my petrification persisted.
I also never thought I would be particularly well-disposed to parenting. When I observed others engaged in it, it didn’t seem like something I’d enjoy, and I thought that personality-wise, I was too selfish and not patient enough to be a good parent. I felt like I knew myself pretty well, and I thought that the likelihood of changing my mind (as people always say to women who declare they don’t want kids) was low. But maybe there was a slim chance I would change my mind. Maybe, likewise, I’d be more patient and less selfish with some years under my belt. However, at the moment my gyno encouraged me to get started soon, it wasn’t really a good time.
I know; there’s no perfect time, but that moment was particularly inopportune for the two of us. I wouldn’t say we’d absolutely ruled children out at that point, but it definitely hadn’t been on our near-term to-do list at the moment my gyno made that pronouncement. I was back at college full time and working part-time. Chimp was working in a three-year job as a visiting professor, and we didn’t know where we’d be after that. But soon could still mean a few years from now, and I thought that we’d have a chance to revisit the issue when Chimp got a tenure-track job.
I graduated in 2003, and Chimp landed a tenure-track job in California that same spring. We moved to Fresno in August. (If you ever need to move to Fresno, I would not suggest August as the optimum time to do so, as it’s sort of like moving to the surface of the sun. Actually, the sun might be easier, because you won’t have to drive a U-Haul over the Rocky Mountains to get there. Thanks again, Chimp!) I started my first post-college job at the end of October, and at the start of December, I got the fateful flu shot that kicked everything off.
The idea of kids never had a chance after that. ME/CFS had made the decision for me.
I know there are women who have had children while having ME/CFS. I cannot imagine how they do it. I was so tired even at my best in those mildest first couple years – being pregnant on top of that seemed like an insurmountable obstacle as well as a terrible idea to risk-averse me. What if I had a baby and it made me worse? What if having the baby went okay and then I got much worse years later? How would we ever manage?
In the meantime, I watched from the sidelines as more of my peers’ babies started to be born. At first there were a trickle of births, then a stream, and eventually a flood. I’ve been totally surprised by how many people decided to have children, but I suppose I shouldn’t have been – I’m more the outlier than they are.
Because I never got to have them, I feel fortunate, honestly, that I never really wanted children, and doubly fortunate that Chimp, while probably more interested in the idea than I, didn’t have a such a tie to it that it could become a relationship-ender when I proved unable to carry them.
Maybe if my health hadn’t turned, we might have made a different decision. I’ll admit, when I look at that picture of Baby Chimp, above, I feel a pull to it that I don’t when I see pictures of my friends’ children. I’m sure that’s because we’ve been together for fifteen years, and somehow, my unconscious has gotten programmed to react positively to an infant that looks like my mate. I’ll admit, it would have been fun to see what Chimp and my genes would have looked like combined, and interesting to know the personalities that might have emerged. But neither of those seem like a sufficient reason to reproduce.
I’m sure we could have been happy with children, but these days, when I think about the idea of us having them, it’s hard to evaluate whether it’s having a child that’s appealing, or if it’s that in imagining that scenario, I imagine myself well, and that being well is what’s so appealing. It’s tough to tease those factors out for me. But putting together the possibility of being exactly as sick as I am right now and having a child in our lives as well doesn’t feel good – it feels incredibly stressful. I guess there’s your answer.
In the end, it’s not that difficult to accept that I’ll never be a mother, because the drive was obviously not strong in me. For those who dearly want children and can’t have them, I gather it’s heartbreaking. However, I am sorry – much more for our parents than for myself – that we didn’t give them the joy of grandchildren. After all, people who have kids would probably like to have grandchildren, too. But none of them have pressured us or complained about it, and for that I’m grateful.
I remember a flight I took on a business trip when I was already sick but still well enough to be working. Just by happenstance, I’d been seated next to an older gentleman who was also in the food business. We got to talking about our respective lines of work. At some point he asked, “So, do you have kids?”
“No. No interest.”
“But you and your husband are obviously smart people. People like you should have kids! And everybody has kids eventually.”
“The kind of people who should have kids are people who want to have kids,” I said.
And when it comes down to it, that was never really me.
What an interesting post, Jocelyn. I have to say (and I know this isn’t the same for everyone) that nothing could have confirmed my stance as pro-choice more than actually having a child. People who don’t want children should definitely not be compelled to have them. Yet, choice is for me the operative word here. This was a decision I was permitted to make, and I grieve not for your lack of children, but for the way your disease has limited your choices.
Thomas is a fortunate child in many ways, but especially, perhaps, in the number of deliberately childless people who have made him an important part of their lives. Not having children does not, of course, mean that you don’t host them for the occasional sleepover or take them out to lunch, if you are so inclined. But your post makes me realize how lucky these friends and relatives of mine are to be able (for a host of reasons, including health) to be able to decide on their own terms their level of engagement.
It’s funny–today I’m writing about an old Latin poem in which fertility so clearly symbolizes possibility for the future. Yet that future is mythological, one that the poet himself recognizes was idealized and never existed, and yet simultaneously so alluring that he connects its decline to the moral and political corruption of Rome. As you show so beautifully, sometimes children are children, and sometimes they are a repository for an imagined future; it’s not so easy sometimes to know the difference.
Thanks for that, E. Yes, it’s funny how that path from child to childless woman came about. As a teen I worked in my church’s nursery and taught Sunday School with my dad, and then I worked in children’s theatre for a time. Later, of course, I worked at Whole Foods and had the experience of children often being a total pain in that environment.
We do have a lot of friends and family member with children at this point, and I would love to see them, but I haven’t been able to manage it for quite a time. There are four kids under five on the Stewart side of my family that I’ve never been able to meet – one of whom is my nephew. It does make me sad. I miss my family.
In doing the personal thought experiments for this entry, I realize that all my thinking about children has them being born in the past at this point. That transition probably took place at some point in the early years of my illness when I realized that I wasn’t going to get better. Not all at once, of course, but eventually it starts becoming clear.
This was a very interesting topic and very well written. The issue of M.e and children is one so many people with m.e have to face and it’s not an easy one. I appreciate your honesty, lack of self pity and self awareness.
In my twenties, I thought I would have children one day but obviously something i would do in the future, not then. I’m 40 now, housebound with M.e and single. I realise that the door of motherhood is all but shut. On the whole I’m ok with that because day to day I just need to survive and I just couldn’t imagine how i would have the physical, emotional and mental resources to raise a child. Also as i don’t have a partner, I have less of a dilemma too than someone with a partner. I have a friend with moderate M.e, married and who loves children. She made the painful decision to not have a baby as her health was unreliable and she just had enough health to enjoy some quality of life, bringing a child into it was a big unknown. I really felt for her.
My wonderful sister gave me three equally wonderful nephews and they have provided me with so much happiness and joy from being babies, through childhood and now entering young adulthood. I am very grateful that i have had the honour of being an aunty, if not a mum.
By the way what cute babies you and Chimp were :-)….
Thanks, Annie. It sounds like you really enjoy your nephews, which is great. Yes, there are so many of us with M.E. who are women – this is such a common sacrifice to hear of. But that takes nothing away from its unfairness.
Wise decision on your part. I have felt much of the same way. Even before I became ill, once I hit my early 30s, I realized I didn’t have the energy to take care of children. Having them wasn’t the problem. What would come afterwards was the problem. If I had a child, once the ME/CFS hit, II would have had to ask relatives or its father to raise the child
When I hear of women with ME/CFS raising children, I am amazed at their strength and determination. I think they all deserve awards for doing this. I cannot imagine doing this, as I wonder, as is in a post above, how I could take care of another human being, especially a child which has 24/7 needs, when I have to use all of my energy to get through each day, then do what I need to deal with errands, bills, tasks, appointments. Needless to say, I’m way behind in medical appointments. My apartment is one big gigantic project in progress. I start things I can’t finish. Many things do not get done. Even getting paid bills to the mailbox is a chore.
You have a great family — and you have feline children to keep you company, and they require little and yet provide fun and affection.
Yes, I felt like even if I could have a child, the resulting life I could give it might be totally unfair based on my illness. I think about all the things my parents and I did together that I couldn’t do – the list includes almost everything getting crossed off it! Anyone who can manage it has my total respect.
I totally sympathize with not getting anything done. I try so hard not to add to Chimp’s pile, because he carries almost everything the two of us used to split between us, and house stuff and work besides. And yes, I get a lot of enjoyment out of the cats – they have such individual personalities, and we are always making up dialogue for and having conversations with them. I feel pretty lucky to have married into a family that is as cat-crazy as my own!
Yes, a cat-crazy family, definitely a requirement for a good relationship.
I wanted to say that I have enjoyed being an aunt, although I can’t visit my family, as they’re hours away. They used to visit my city, which was a joy. Now it’s more calls and emails.
I do get a lot of joy out of friends’ children and grandchildren. And thankfully, due to online stores, I’ve been able to buy presents and have them shipped.
I, to my dismay, became allergic to cats years ago but I enjoy a friend’s pets a lot. I also know I couldn’t have dealt with food shopping and buying and changing kitty litter. That wouldn’t have worked out once this disease hit.
So, with children and pets, I am lucky I have them in my life, but don’t have to do the work!
Thanks for sharing – I do love your self-awareness and ability to describe things objectively as they are, pros and cons…
My own story is that we took the decision to have a baby when I was moderately ill (could walk 200 metres per day, though mainly wheelchair bound).
Lots of people encouraged me to get pregnant, because it has the effect of ‘reshuffling’ the immune system and many people get better. I got pregnant – and had a relapse. By the end of my pregnancy my mobility was down to 100 metres per day.
I asked doctors and specialists whether I should have a C-section because I was worried about the physical exertion of labour. One doctor told me, ‘labour isn’t fatiguing – the uterus does all the work for you.’ (so many things wrong with that statement, I’m nit sure where to begin…) One understood the potential risks, but said there hadn’t been enough research to predict what would happen, and it would definitely be better for the baby if I gave birth naturally. Plenty of people with moderate ME give birth naturally and it doesn’t seem to harm them. I had a short labour but couldn’t push my baby out. I was exhausted- completely, no-energy-left exhausted, after 5 minutes. I pushed for a further 90 mins. Needless to say – I had a major relapse. I went from being able to walk 100 metres a day to being near-bedbound. Then improved over a period of 3 months bed rest; then relapsed. Am now much better, but still housebound.
Fortunately my husband (a minister) has ultra-flexible hours and works from home, so he does all the lifting and changing and cooking etc. We get a nanny in who plays with him in the mornings while I rest, and I play with him in the afternoons, reclined on a sofa. I’m not heroic in being a mum – i’m just hanging out with my kid to the degree that I am physically able. Thankfully, he’s turning out to be a very happy, ‘easy-maintenance’ (slept through night every night from 3 months) kid, who has a really strong relationship with both Mummy and Daddy.
Would I have had a child if I knew what effect it would have on my health? No way.
Do I regret having had him? Not for a second.
That’s the paradox of my situation. (ME is a disease that seems to create paradoxes and poignancies…) For someone with ME who is healthy enough to get pregnant, it’s still a very difficult decision to make.
Anyway – thanks again for sharing.
Good for you in having that baby and being able to take care of him for part of the day. That is fantastic. (I can’t believe that a doctor — no less — said it doesn’t take effort to push out a baby; the uterus does the work! That’s astounding. It flies in the face of every childbirth story I have ever heard!) That baby is very lucky to be so well loved and cared for.
Thank you. Yes, it was astonishing that the doctor claimed that labour wasn’t fatiguing. At that point I was like, ‘yeah…we’re going to need to speak to a consultant…’ – clearly we were not on the sane page!
It’s really great that you are an aunt and can impact on the lives of those little ones. We have a goddaughter and she is really special to us. It’s great to feel a part of her life too.
That is absolutely astonishing, Tanya! I’m going to guess that that doctor was male – just a hunch. 😉 Thanks so much for weighing in – I have only heard of mothers with ME/CFS secondhand before now. And I agree, this illness is so much about juggling paradoxes.
“clearly we were not on the sane page!” SANE!
Either this is the best typo ever, or the best pun ever, I’m not sure! 😀
I hope you saw the article in the Feb. 7 NYT Science section by David Tuller. I thought it was a mixed bag and that Tuller is afraid to commit. But other bloggers think it’s a positive article, so I’m slowly thinking this through.
I agree with you – mixed bag, but anything that’s not aggressively negative is at least somewhat positive these days.
I’m sorry I can’t find the link, but maybe you saw the other article Tuller wrote about CFS? He was fully committed, but the New York Times wasn’t. He couldn’t get it published in any major paper and eventually put it on Vincent Rachinello’s virology blog. So I think Tuller is committed, he’s just a matter of finding the right angle and getting the editors to agree that it is an important story.
I found your blog after ou left a comment on mine (blogwormwood). I was surprised I never came across your blog before. My boyfriend recognized the name NoPosterGirl from a GcMAF chart. Anyway, here I am, and right on time. The question of whether or not I want to have children has been on my mind a lot, especially the last two days. I haven’t talked about it with anyone though. I’m about to turn 28. My boyfriend is 30. He is applying for new jobs. We might be moving across the country. All of this is making me think about the future and what I want and if it involves raising children. And it’s so frustrating because how can I make any decisions about the future if I don’t know what my health is going to be like?
Unfortunately, I think I am getting worse and don’t see why I won’t keep getting worse. Like you I never played with baby dolls and I never really WANTED children. But I always liked being part of a family and never ruled it out. When I was in my early 20s though I remember saying I wasn’t going to have children, jus because I would be a terrible mother because I slept too much so how could I take care of them? This was before I knew I had CFS and just thought I had depression.
So many unknowns. Of course I am afraid of the stress and strain of a pregnancy. I’m afraid of having kids and not being able to raise them, of putting even more work on Jim’s shoulders. Even if our parents help and we have a nanny or something. But most of all living so long with illness has made me scared of having a sick child. It’d be different if I were healthy, but with me like this, I’m afraid it would destroy me. And my destruction of course would affect a lot of other people…
Thank you for this blog. Just hearing another woman’s thoughts on the subject is immensely helpful. I know chances are I will not have children. But it scares me. The women I know who don’t have children all have active work lives and large social circles. That is not me at all. I am worried about being lonely later in life, even with being married.
Anyway. I see that you’re a Cheney patient too. I have my 4th appointment at the end of the month. I was on the sublingual GcMAF and it did nothing. I’m on the MAF 314 now. I’m still getting worse but it might have helped with my sleep. I’ve been going to sleep earlier and waking up earlier. I think that’s starting to end though. I think when I see Dr. Cheney I will have to report no change.
Thanks for your thoughts, Alison, and welcome!
I think the worst part of that is the idea that if you did have a child, that he or she could also come to be ill. Knowing the misery of living with this disease, it would feel indescribably cruel to make that a possible part of another human being’s life. I could never forgive myself if that happened. So that’s another mark in the nearly-filled con column.
In terms of decision-making, I’ve felt for a long time that I know what my health is going to be like. Bad. Heh. Like you, I don’t see any reason I should think that I’ll get better. I’m not expecting any miracles at this point, though for a couple years there it seemed like we were on the cusp of some.
And yes, I’m a Cheney patient too. I’m also about to have my fourth appointment – mine’s in late March. Best of luck with your travel. I was interested to hear his recent thoughts on GcMAF treatment and look forward to asking him more about that when I visit. Having had a rough reaction to chemical GcMAF (after my third full dose, I had five months of feeling feverish, which I think could fairly be classes as IRIS/cytokine storm/regression) I am wary of trying the new stuff. And as someone in the KPS 40-45 range, I fear that it may not be a good idea for me, period.
That is what Dr. Cheney is saying now, that people with that low of KPS should probably not try GcMAF. (I think) I guess you know. Mine is right on the border, low 50s. I’ve just realized I met your husband at the MAF 314 yogurt clinic. He started the listserv. There were there women there, I was the youngest. I was with my dad who did most of the talking because I was pretty tired. Wondering if you tried the yogurt and had a bad reaction too.
Yes, Michael went to the October clinic. I haven’t done the yogurt, because I was waiting for the IRIS to abate. It did so about a month ago, but given that I was going to need to basically do the pre-testing over again and how much trouble some people were having with the yogurt treatment, I decided to wait until my appointment to talk it over with him.
Hi Jocelyn. I’m sending your list of sleep medications to my doctor as we can’t figure out what to do as one I’m taking gives me a very rapid heartbeat, but without it, nothing happens.
Do you take anything for pain that works and that doesn’t cause undue side effects? I’m using Tramadol, actually 1/2 a dose, but it gets me wired and keeps me up all night.
Kathy, I actually take beta blockers because without them, the Seroquel runs my heart rate up. So that’s another potential direction to go. Hope you find something that works.
My pain has improved quite a bit from taking low dose naltrexone, so I’m not using any meds for pain right now.
I adopted my daughter 2 years before I got sick (and divorced shortly afterward). I went from an energetic single mom chasing around an even more energetic toddler, to a mom who couldn’t get off the couch for almost 6 months. Kiddo is 8 now, and she’s a real blessing to me, although when she’s not around I cry and pray that she won’t grow up feeling like she has to be “too independent” because she has a sick mom. She tried making her own scrambled eggs when she was two! :-O
I wouldn’t trade her for the world, but if I knew I was going to be so sick, I doubt I would have adopted. I feel like it’s really unfair to her sometimes when I sleep so much, I don’t have the energy to fix dinner, when she has to forage for snacks in the cupboards. When she was younger she missed school sometimes because I literally didn’t have the strength to get her dressed in the morning. Now she gets herself up and out the door to the school bus, and I don’t wake up until she gets home from school at 3. I can usually pry myself out of bed by 4pm, and start thinking about what to feed her, help her with her homework, and pack her lunch. She goes to bed at 8, which gives me a few hours to catch up on my email, and then I collapse again.
Every spare ounce of energy goes to her. Every single bit of it. She deserves it, and more.
To be perfectly honest here, one of the reasons I remarried is because my husband is a great guy, a wonderful role model of a father, and because I need help around the house. I do love him, but I’m not in LOVE with him. I feel horrible just writing that, but there you go.
Wow, Grace, what a story. You’re clearly doing the best you can by your daughter, but I know it’s immensely frustrating to not be able to give her all you’d like. I hope that when she looks back on her childhood, that she’ll realize and appreciate that your commitment to her, percentage-wise, was greater by far than many mothers,