I always wanted kids. When my husband and I got married, we thought three kids sounded like a good plan. Even though I got sick two months after we met, and was still sick when we married less than two years later, we bought a house with a large yard and in a good school district. We wanted a family.
One of my closest friends got pregnant about a month after my wedding. And watching her, I realized that pregnancy is hard. And having an infant is hard. Raising children is hard. According to the newly published CFS/ME Primer for Clinical Practitioners, pregnancy is not contraindicated in women with CFS, and some women may even feel better during pregnancy, perhaps due to increased blood volume. But it goes without saying that having kids is hard on healthy people. It is even more difficult for people with CFS.
So we decided to wait. It was impossible to imagine that I could be sick for longer than two years, or three, four, or five. So my husband and I decided to put off having kids until I felt better, or was at least more stable. Then we thought about how much help we might need, and whether we could afford that help. What kind of parents would we be, given how much we struggle to cope with CFS every day? The years rolled on, and I stayed sick. Eventually, we realized that we would not be able to have children.
This is my biggest loss to CFS. Being a mother was not just part of my plan, it was part of who I was as a person. And it’s not just my loss. My husband will not be a father. It seemed that my parents would not be grandparents. I felt guilty about being the source of this difficulty, and I felt like a failure.
Enter my niece, E. My brother and his wife gave birth to a gorgeous baby girl last week. My parents are, at long last, grandparents. And we have a new life in our family. To hold a baby is a delight, and to watch my brother and his wife become parents is a true gift. Watching them this week has shown me that my husband and I made the right decision. We could never have done this. The energy required to cope with a baby’s physical needs is far beyond my reach, to say nothing of the emotional side of parenting. I’ve been wearing my heart rate monitor while helping to take care of E, and it is abundantly clear that having a baby would have been leagues beyond my physical capacity. This does not make me sad; it gives me peace. Our decision not to have children was painful, but it was the right decision.
E is beautiful and healthy and a blessing in every way. I can’t imagine how we coped without her all these years, and she was definitely worth the wait.
I am pleased for you, Jennie. I have a nephew (9) and two nieces (5 & 2) and they have brought me much joy.
Regarding percentages, I’m going to post possibly the most widely quoted study on the effects of pregnancy (there hasn’t been much research I think), with a typo corrected:
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http://www.ncbi.nlm.nih.gov/pubmed/14980991
Arch Intern Med. 2004 Feb 23;164(4):401-4.
A comparison of pregnancies that occur before and after the onset of chronic fatigue syndrome.
Schacterle RS, Komaroff AL.
RESULTS:
During pregnancy, there was no change in CFS symptoms in 29 (41%), an improvement of symptoms in 21 (30%), and a worsening of symptoms in 20 (29%) of 70 subjects. After pregnancy, there was no change in CFS symptoms in 21 (30%), an improvement of symptoms in 14 (20%), and a worsening of symptoms in 35 (50%) of the subjects. The rates of many complications were similar in pregnancies occurring before the onset and in those occurring after the onset of CFS. There was a higher frequency of spontaneous abortions in the pregnancies occurring after, vs before, the onset of CFS (22 [30%] of 73 pregnancies after vs 13 [8%] of 171 before; P<.001), but no differences in the rates of other complications. Developmental delays or learning disabilities were reported more often in the offspring of women who became pregnant after, vs before, the onset of CFS (9 [21%] of 43 children vs 11 [8%] of 139 children; P =.01).
CONCLUSIONS:
Pregnancy did not consistently worsen the symptoms of CFS. Most maternal and infant outcomes were not systematically worse in pregnancies occurring after the onset of CFS. The higher rates of spontaneous abortions and of developmental delays in offspring that we observed could be explained by maternal age or parity differences, and should be investigated by larger, prospective studies with control populations.
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This part in PubMed actually says:
After pregnancy, there was no change in CFS symptoms in 21 (30%), an improvement of symptoms in 14 (20%), and a worsening of symptoms in 35 (**20%**) of the subjects.
This 20% figure is clearly wrong if one looks at the percentages. I have also checked the full text and 50% is the correct figure. It is frustrating that a correction has not been made.
Hopefully there will be more research in this area.
@Tom Kindlon That should have been:
“Regarding pregnancy” rather than “Regarding percentages”
I’m not well enough to take care of a pet. I’m sure as hell not going to bring a child into this.
What a lovely thoughtful and well written article. Since coming down with this illness, I have often thought about how difficult it would be to cope if my children were still young.
I had not yet considered the issue of would-be parents who have to make the difficult, but sensible, decision to choose not to have a family. I have adult “children” now, but can empathise fully…..
How lovely that you can now take such un-selfish pleasure in the birth of your niece. Extended families are wonderful. E is a lucky young lady to have such a warm family circle and an obviously doting aunt. 🙂
I’ve recently enjoyed some modest improvement in my overall level of health and so I have traveled this summer to spend time with family. I too have come to a similar realization.
I’ve wanted nothing more than to be a father and yet I could not adequately care for myself let alone children. And while time with family (and nieces/nephews) has reaffirmed that my wife and I made the right decision, this summer has also brought with it brought with it a heightened sense of the deep losses associated with this disease.
Thank you for sharing your own experience.
And thank you for sharing yours, Shane.
My other half wants a child, someday. He’s in no hurry, which is good for me because apart from the ME, I don’t know if I want that. But with ME, with the way I feel just trying to cope with supporting the two of us (working, relapsing, working, relapsing) and looking after cats (even that is a challenge), I would never consider it.
Not only would it be too hard on me physically and emotionally, but it would be hard on him and incredibly unfair to ask him to work to support us and then come home and do all the things I couldn’t do through the day.
Mostly, though, I feel it wouldn’t be fair to a child. How could I explain to them that I wasn’t able to take them to the park or play with them like their friends’ parents do? I’d feel I was depriving them of something.
And unfortunately, I feel like that hesitancy is going to harm my relationship, because he really does want a child one day.
There are no easy answers. I made a logical decision not to have a baby because I knew I couldn’t handle pregnancy/motherhood with CFS. And then we got pregnant accidentally.
Parenthood is life-changing, and now that we have our daughter I am overwhelmingly grateful that she is a part of our lives. But pregnancy and the first 3 1/2 years have been crushingly difficult. Even with lots and lots of help (a husband who’s home often, a mother who comes over every weekday), making it through has been almost impossible. I wake up every day wondering how we will make it through, stumble along hour by hour, occasionally have a nervous breakdown in the evening, and then wake up the next day and do it all again….
She starts preschool in a week, plus life gets easier as kids get older. So the difficult years are brief. But they ARE difficult! As much as my husband would love another child, and as hormonally baby-crazed and tearfully reminiscent as I get whenever I see a tiny one, we will not be having a second.
Thanks for sharing this, Tara. I understand why you would have no regrets about having your daughter, and I also understand why you would not have a second child. I’m glad you’ve been able to make it work!
Thank you so much for this post, Jennifer. It mirrors almost exactly what I am grappling with (I am even too sick to be able to live with someone and have a normal relationship – another sorrow to accept and deal with). It means a lot to us that you bring these things up!
I dont know right now what to do with having children or not. Im not well enough for a child, but on the other hand I think I would be a good father in other ways. For me its four question that has to be answered apart from your own well beeing and you have to compare them to your own will to have children.
1: Will you have help besides your partner in taking care of your child? A parent or someone else, probably a relative has to help a in the upbringing of the child, thats not wrong for the child though. It helps him or her to create a bond to another grownup.
2: Can you afford it. Its expensive with kids and since I cant take care of the child full time who will? My partner has to work. This can only be helped if question number 1 works out.
3: Can you handle the risk and the possibility that your child may get ME. This would be terrible in a lot of ways ofc. The worst part will probably be dealing with people who dont belive your child is sick, in school, doctors and so on. It will take enormous amount of energy.
4: If you work, its a clear risk that you cant continue with that ever even if question number one is ok. Cause it will take to much energy even a small part time work.
But children is possible, but you need to have thousands backupplans and be as prepared as possible.
Also i read in the comments that one of the comments come from one who have a child. I also would think the first period will be very hard. For me im thinking about involving my partners mother a lot, more than just weekend since she will be a senior in a year, and shes in great health and shes very helpful, nice and empathic. To have a third party really involved are probably the most important thing.
I do understand. My daughter was 14 when I became completely bedridden. I missed her entire teenage years as well as the birth of my grandkids. This illness is thief of dreams and many must make some very difficult decisions. I’ve improved over the years by use of supplements to heal the immune system, remove toxins, learning deep breating exercises and other life chages. I’m no longer bedridden yet am mostly housbound. I’m just grateful to be out of bed. I have a wonderful support group on Face Book, if you would like to come join us. I offer lots of natural help and our group is such a huge support for one another. I’ve included the link in the spot for Website. We would love to have you with us. Blessings to you in all you do. I’m sharing a couple of my articles with you in the hope that they may lift you up.
Article written for May 12 – 12 and added to ProHealth
Walk In The Light of Your Fearlessness
http://www.prohealth.com/library/showarticle.cfm?libid=16911
Link to Article : Grieving in order to heal published in ProHealth on 7-4-12
http://www.prohealth.com/library/showarticle.cfm?libid=17075
Clarissa, I love that phrase “thief of dreams.” It is indeed.
A belated Yay! And Congratulations!!
I agree that not being able to have kids is one of the worst things about ME. I have no kids but very much hope I will be well enough some day to have or adopt children (I used to think 3 would be ideal, but I must agree now that under our circumstances, less is more). No nieces and nephews yet, but also looking forward to that some day.