“Chronic Fatigue Syndrome…..has made me a better mother when it comes to nurturing and loving and …supporting” ME/CFS mother
Pregnancy. Talk about a major decision. It takes boldness to have a child when you have a chronic illness life ME/CFS and doing so raises major questions.
In this panel moderated video conversation from OFFER Utah, four women with Chronic Fatigue Syndrome speak at length about their experiences with pregnancy.
Each wondered if they should become pregnant. Each wondered about their health, about their ability to take care of their child.
One woman put off having children until she was healthier, realized she’s probably not going to get better and has the child. Looking back she would have worried less and had children sooner.
“If you decide to move forward, then get your support system together and move forward….Because you don’t have to be scared”
Some got worse during pregnancy, some got better. One woman’s ME/CFS completely disappeared (and then came back). They answered questions about how the doctors were, what the post-partum period was like, how having Chronic Fatigue Syndrome affected their relationship with their children, would they have done it again, and what would they have done differently? Just about everything.
Check it out in the pregnancy discussion from ME/CFS mothers who have been through it in this video from OFFER Utah.
If you were pregnant and had ME/CFS how did you do?
I had ME for 4 1/2 years when I decided to have another child, a first for my partner. I had my first 2 when I was in my early 20s. Getting pregnant was easy, pregnancies were pretty much perfect.
Fast forward.. now in my late 30s. I talked to my specialist and primary care provider about becoming a new parent at my age and with my illness. I was given the green light, though cautioned about how much help I would need. I was well prepared, having already had children in my healthy years, my partner knew exactly what was required of him. All systems go.
After 2 early term miscarriages, we were sent to the fertility specialist. After some serious testing, it was found that both of us were in great reproductive health. The big question was, why could I get pregnant so easily but not carry very long? A third miscarriage.
More tests, this time a complete immunological panel done because of the ME. Verdict, my immune system was attacking my ovaries – most likely because of the immune issues that come along with ME. My eggs are toast.
We were offered IVF but cautioned because the chanced of finding a useable egg were next to none. We decided on having my partner sterilized so that I could resume experimenting with ME treatments without having to worry about the effects on an unplanned pregnancy, on the chance we actually got one to go the distance.
Right before the vasectomy, we decided to try again. I had 2 more miscarriages, back to back.
We are done trying now. The physical toll being pregnant and then not pregnant over and over again is indescribable. I’m very slowly coming out of the deep hole that payback dug for me.
I know of a few women who have ME and have had healthy babies, but I do caution those who are thinking about conceiving, get a thorough check up before trying. Best of luck to those of you who are.
My goodness Angie – that’s really something. I would note the high rate of gynecological issues a few studies have found as well. One of the woman on the panel had had a successful pregnancy when she was healthy but then miscarried after she got ME/CFS. The other three women did fine..
Thanks for relating your experience.
I am 37 and have 8 months old born 8 yrs post cfs and an 11 yrs old born pre cfs. This last pregnancy was THE worst suffering ever. He is healthy, but the challenge is dealing with the guilt of parenting from bed. The pregnancy was unplanned I wouldnt recommend having children when people have cfs. My husband can’t even work because he has to take care of us.
Thank you both so much for sharing. I am in the midst of this decision right now and your experiences help so much to come to an informed decision. There were signs that I might be going into a remission, and if I did get at least 50% better I would consider it. Even adoption is a difficult decision though, considering both potential financial struggles, and guilt. I had a sick mom myself (rare non-Hodgkins Lymphoma that was not considered in remission for a full 10 years) and I grew up not very close to her because of it, but did not resent her or the situation at all. I loved her, but looked to my primary caretakers (other relatives) as being my maternal figures. Having a baby biologically involves considering passing these genes on to yet another generation, and also what the experience of the child is like. I’m not certain because I really wouldn’t take my life back, I’m quite pleased with how it turned out despite everything. But would my kid feel the same way I do, biological or adopted? Hard to predict the future. The only thing that can help is stories like yours. Thanks for being so honest.
My children were all born pre ME (cfs). I also had two miscarriages pre illness. I don’t know what my decision would have been if I’d already had ME, but all I know is that this disease has left its mark on all my children, some of whom have suffered from reactive depression. I certainly would not want to give my children back, but I feel they have had a difficult life without a mother who could nurture them the way they deserved (although I’m sure they would disagree). Perhaps my illness has made them stronger, but there is no denying the guilt it has left me with.
It would be a very tough decision to make and one which only the individual herself can do, weighing up what is right for you and what is not.
Pregnancy and motherhood is a wonderful thing and for me with or without ME/CFS I feel blessed for having experienced it and having my children in my life.
I became pregnant with both of my sons before I was diagnosed with CFS. I was diagnosed in 1994, but my first EBV relapse was the month before my first pregnancy in 1989. It was tough for the last 23 years, but it was worth it! I couldn’t have done it without my husband’s help and the help of my parents and many babysitters. It’s really been hard, when I’ve had severe relapses.
I sometimes wish I had had more energy for my kids, mostly so I could have travelled more with them. But my husband did a lot with them, and so did their schools. They have been the biggest blessing in my life, and are amazing beautiful young men.
Cathy
I had my first child at 26, had a BAD pregnancy, resorted to crawling round house on hands and knees too exhausted to walk didn’t know what was wrong with me everyone said it was just the pregnancy.
After the birth I was fine again till she hit 3 months old then was struck down with ME so bad that I was completely bedbound for 2 years. Unfortunately it was misdiagnosed as postnatal depression. My Mum looked after the baby at her house til she was 2. I then began part time parenting over the course of 6 months when I was able to bring her home full time.
It was good for 2 years, I even managed a parttime job, then got pregnant again. This time I was given mentalhealth support due to the PND, but I was ok, though I was carrying twins, lost one, nearly lost the second, had to have total bedrest but managed to get to 7and a half months and delivered preterm.
I then collapsed when she was 5 days old with a suspected Pulmonary Embolism. I was ill for months,on heparin and warfarin, again not well enough to take care of my kids. eventually I recovered enough to have baby at home by myself but as soon as I tried to add anything to the mix I got ill again.
when she went to school at 4 I got a pt job and slowly increased the hours from 8 to16 a week but got more and more ill until 4 years ago I totally collapsed.
I have finally been diagnosed with ME and it has been a long road going from toitally bedbound to wheelchair based to walkers a stick and now I can get round the house again and drive the schoolrun. But I can’t cook or do housework let alone find a job- half the time I can’t even manage to put the kids to bed.
I have had repeated miscarriages over the years and it is a miracle I have children at all, let alone that they live with me!
I am grateful for my mum’s help and support otherwise there is no doubt they would have been taken into care due to my illness.
What angers me is that I had this for over 15years before getting a diagnosis – I was repeatedly misdiagnosed and pushed away rather than investigated properly.
I have two beautiful children but I feel I have never had a baby as I was always too ill to care for them at that age. I would love the opportunity to try again yet do not wish my condition to deteriorate again for thes sake of my other two kids.
I grieve the time I have already missed with them. I don’t want to lose their futures as well, but I also want to experience being a proper mum. Am I greedy? Is it wrong to covet other people’s good health? what is wrong with craving wellness? what is wrong with wanting to live a normal life? I hate the halflife in the shadows, invisible to the world and too scared to live a dream. this illness sucks.
What a long road you’ve had Holly. I think the desire to be a ‘proper mom’ is normal (how could you not want that?)
For some reason this is your path for now. Who knows why? All we know is that it is. I wish you and all of us good luck in walking it the best that we can 🙂
Thank you for sharing, that is a very hard story, and was probably hard to tell. I appreciate it, because it helps me decide in my own life about whether or not to try to have children, and that is the hardest decision I will ever make.
I don’t think anyone can ever tell you what is the right answer as to what you decide to do with your body and your life, ultimately you are the only one who can know what is right for you. But I would say, if perhaps this offers some clarification for you, if you do not have any specific reason to think things would be different, why would you expect a different outcome the next time? You now have a diagnosis – but have you been given any treatment or medical advise that would have dramatically changed how your previous pregnancies went if you had known this before them? It sounds like you almost died from your other pregnancies – another one might actually accomplish that. That would not be fair to you, or to your children – who could really use the extra energy you are getting now to make up for some lost time.
Another thought, again without any judgement at all, but perhaps that might help you see all sides of this. There is nothing wrong at all with wanting to be a parent, and wanting a “normal life.” But it seems that most of us struggle almost more with our perceived losses than we do with the physical part of the illness – as humans we tend to be resilient and can physically adapt to almost anything (no matter how painful and difficult, save only death itself), but mentally, it is really hard to adjust to a change in what we can do. We feel shame, and we feel like we are being deprived of something everybody else gets. The hardest thing about life is often the expectation of what we think it SHOULD be, in contrast to what it actually turns out to be. But if you had grown up expecting a life without arms and legs and no children at all, you might find this life to be enormous good fortune. That is just philosophy, it might not ring true for you. But what if you worked on accepting the illness as is for a while as your top priority? It might not make the pain in your body any less, but acceptance is a huge part of relieving the mental anguish for all of us chronically ill patients.
If you are not already familiar with it, you might find Buddhism’s perspective on loss very helpful. It doesn’t have to be a belief system for you, just a way of seeing the world in an area that has been difficult in your life. Grief counseling might also be useful for you, to process what you have lost in this illness. I find it very helpful personally to both allow my grief through me rather than denying it, but also to consider that if I had different expectations (or none at all) of life, how I might not really have lost anything after all. Really, I can see a ton that I have gained from this illness. Empathy for others who are ill, an ability to connect, practice in expressing my feelings which I was not good at before, and in the end actually an entirely new life as I was forced to switch the focus of my career, romantic life, where I lived, and nearly everything about how I lived.
Because I had no choice but to reevaluate myself and also the company I keep, how I spend my money, and what I do with my time – I actually ended up with a better life than I had when I was healthy! Sure, I’m bedridden in that new life most of the time, and that still sucks royally. I hate feeling like I have the worst flu of my life every single day year after year without a break. But on the other hand, I have gotten used to it, and when I don’t expect something different, it’s not so painful to me. And I think I am a better person because I got ill, and I no longer waste my time on people who are not really worth it. Mentally, I am a billion times healthier than I was when my body could do everything it thought about doing. I am a lot happier. Weird, huh? Maybe this illness took away my ability to have children, and if so, that is very sad from one perspective. But from another, not having them frees me up to have a whole different adventurous life with more money just for me, and far less responsibility. I also don’t have to change diapers, help anyone with fractions, watch my language around others, or keep regular meal and bedtimes. And I can still be around friends’ or neighbors’ kids, or volunteer with children, anytime I actually feel I have the energy (still waiting for that feeling to actually last more than an hour, but it might happen, lol).
Anyway, you may decide that it is worth it to try to have another child regardless. But of course, that new life is not just about your experience, it is also the new kid’s experience of it. Will it be a quality childhood? What if the child is born with disabilities or illness, can you handle that? Would you have the support of your other children and relatives to do this? It might be even harder the next time around if no one wants to help.
You know your life best, so maybe it actually is a good idea to try again. But from another way of looking at it, I would kill to be in your shoes, actually having two children who have come into the world safely already whom I could get to know. I have no kids, and no family, and now may never have either. Depending on your perspective, maybe the way your life turned out is not such a loss, but a tremendous gift.
I hope these thoughts at least help to consider another way of looking at it. The disease we have is not fair. But then again, a friend of mine died last year at only 32 in her sleep, with no warning. She had no kids, and no family of her own, she had focused on her career and was just about to start focusing on her personal life. From that perspective, every day we get to live at all is pretty great. I try to live my life for her, mindful of the things she cannot take pleasure in now. I’m really grateful to even have the chance, even if not everything in my day goes according to how I would want it to. No matter how bad one thing goes, it seems to always make room for something I’d never even considered before to go really right.
food for thought. thanks xxxx
Hi after this and your perseption on life I am somewhat worried about my son’s future and his future wife as they are about to get married after 10 year’s together and from both being very active in the early years he even did the UK Iron Man she was finally diagnosed last year with this horrible illness. My husband and myself are not in the prime of life 75 and 69 I am somewhat worried for their future as both are an only child and am concerned the support network may not be there should they decide to start a family she is 34 he is 37.
I realize that there is nothing I can do to change things but should I be asked what advice if any I can offer them.
A worried parent.
Wow! Well done you… I hope to start instilling some of your perspectives into my life… thank you for sharing
I put off having children until I was better. At the age of 42 and having had ME for 17 years I realised it was now or never to try for a baby despite my continued ill health. I conceived and had a healthy baby girl who is now 7 months old. The pregnancy was difficult during the first trimester but my ME greatly improved during the second and third.
I would urge any woman, or man, with ME who is putting off having a family until they are better to just go for it now. There is never a right time. Why delay your life? I regret not having tried sooner as my life is so enriched by having my baby. If I was younger I would have tried for more.
Yes it’s tiring but the rewards are so great. Let’s face it, we are all exhausted all of the time anyway so why not be exhausted for a good reason! I have surprised myself by how well I am able to care for my baby. Never underestimate a maternal instinct, however ill the mum may be she will always find a way to put the baby’s well being first.
For me having a baby has made me feel that I have a purpose in life for the first time since I left work due to this illness. It’s amazing and I feel truly blessed.
I will try for another baby with the hope that my tired old body can perform another miracle for me. But if it turns out that I am now too old I will always be truly thankful that I bit the bullet and had my baby before it was too late.
For me the decision to have a baby was agonizing. I knew I wanted a family but I was so worried about being ill that I found it a very difficult decision to make. With hindsight I wish I had been braver sooner.
I now see able bodied mother’s with Nannies and who use nurseries all the time so there is always support and help to access should you so require it. I would say just do it!
If I had known how wonderful it was going to be I would never have delayed or agonised over the decision and by now may have produced lots of kids! Don’t be scared, if it’s something you have always known you have wanted then be brave and take the plunge. I for one have no regrets that I did. I am one very happy mama!
This sounds wonderful, and I’d like to believe it. But for many women with severe M.E., including myself, just surviving day to day is a major struggle. I can barely take care of myself. Add to that having no money coming in because we cannot work, so facing poverty and potential homelessness is a constant. M.E. is known to lead many to divorce, and certainly to make starting a serious relationship difficult. So that means many, like myself, would be facing single motherhood. For quite a few, there is also no support network – family members and friends who do not understand or believe the disease is real, or a situation where there are no family members at all to provide support. So, realistically, when you say that you feel you waited too long and anyone putting off having children until they get better should just go ahead and do it, my question is: I am really glad you found this to be true in your life. BUT, for those of us with NO support network, no income, bedridden or housebound, and single – HOW in the world could having a child make that better, no matter how much we want one? I totally agree with having a good reason to feel tired, and at least having a sense of direction and being needed in life. But on the other hand, sure, the idea of hiring nannies is great – but who can afford such a thing who doesn’t even have a job?
Perhaps this sounds like I’m whining – and seeing as I only got 3 hrs of sleep AGAIN, I am in a whiny mood, so maybe I am. But I would truly love for someone to lift this worry from my head and find a way for me to make this possible. At this time, I really struggle to stay alive every day, to feed myself, pay my bills, get back and forth to the bathroom, survive to tomorrow. I am at a place where mentally I could provide a great deal to children, to teach them things, and provide a great deal of affection. But I can’t do almost anything physical with them at all, and would have to be very careful not to get sick from them, or crumple in pain when they are accidentally too rough. I don’t know that I have patience for the all day screaming and throwing stage of toddlers, either (my personal opinion is that toddlers are monsters from hell, lol!) – I hear it on the phone with my friends, and it gives me a headache just for the phone call.
More seriously, I have several friends with children who have disabilities, and also a friend whose baby recently had emergency heart surgery (they thought he had a cold, and had no idea he had a congential heart defect!). To be honest, we do not know what we will get, and I can’t see how in the world I would manage in a situation that turns out even more difficult than the average child. Nor how I would afford it. Those people all had spouses and extensive support networks nearby, and they still struggle tremendously.
So anyway, is there truly a way I could pursue having children in my current state? Even if we skip the issue of biology, I doubt that I would pass any adoption application given my health state, my finances (plus I can’t afford the adoption itself, which is often 40k), my lack of social support, and the state of my house (cleaning is a lower priority than eating, sleeping, and getting my medication right now). I would love to have a family, and I am at the prime age to do so. If I wait much longer, I will miss my window. But how can I make any decision other than to wait until I am better? No matter how much love I have to give, what kind of a mom would I be if I can’t even clean up vomit or get the kid to school every day on time? What kid wants to stay in the house all day while I lay down because I can’t take them to the park? Who is going to go out to buy clothes for them, or cook their meals? And god forbid if my kid had a serious illness like my friend’s baby, and I missed it because I was too distracted by being ill to realize how serious it was until it was too late, how would I ever forgive myself?
This is not to rain on the parade of anyone who is successfully parenting with M.E., I am in awe of all of you. But that’s what I mean, I’m in awe, I just don’t see how anyone could do it without substantial financial resources and hands-on support from friends and/or family. What I wouldn’t give just to have someone take ME to the doctor or pick up my Rxs – I can’t imagine what it would be like to also be responsible to take another little being to the doctor, too! *I* need a Mommy! I feel like there are teen moms who would be better equipped to be a parent than me, even though I am 20 years older and wiser than they are. (I feel like I am 80 years older…)
I still hope for better days, and perhaps even remission. Maybe that will happen at a point when it is not too late for me to have more in my life than just myself. But I don’t think I can have a child now, M.E. be damned, just because I want one. I’m open to suggestions if someone wants to help me, though, lol! 🙂 Perhaps I should take donations…
I think you’re looking at the hard realities of having a kid in your situation, Sunshine, which is exactly what you should do.
Dr. Klimas thinks the 2nd pregnancy was the last straw to make the ME/CFS come out. My daughter is 13 years old and is the dream of my life! The pregnancy finished my heart off and I went from being an athlete (2000) to open heart surgery patient valve repair (2006) and 3 post surgery strokes, last year heart ablation (2013).
I beleive… if you want a baby and find or create a support system, THEN DO IT! How many people have babies and bad things happen later! It has been the greatest joy in my life and yes… the little one has had to take care of me at times… but I am stable enough to spoil her now!
Good luck to those of you wishing to have this adventure…
Francesca
I didn’t have a name for my illness when I became pregnant. By 1987 I had already had what I now know to have been ME for 17 years..so it didn’t even occur to me wonder too much about what I was doing. I was at the ‘walking wounded’ stage when I first conceived. In the very first few weeks I found my ME symptoms increased considerably..especially the balance and sensory overload type symptoms. I craved sugar to give me energy. I very quickly developed severe hyperemesis gravidarum which lasted until about week 20 or thereabouts. Once I’d stopped being sick 24/7 I experienced a dawning sense of freedom in my body..a sensation of being let out of a cage that I’d never felt before..or at least not in my adult life. The remission of pregnancy was the best remission I have ever had..I would say I was functioning at about 80%. Yes there were issues which were (as I later discovered with correct diagnosis) ME related, but I felt on top of the world (comparatively speaking). The benefits didn’t cease abruptly with parturition, so it wasn’t simply a pregnancy hormone phenomenon (I have tried to replicate it subsequently using HRT to no avail)..I suspect it had more to do with changes in immune function and immune suppression during pregnancy (I brought this up with Prof Edwards and he felt that it reflected the sort of B cell behaviour that the Rituxan studies might be addressing).
Without design (who would be that daft??) I fell pregnant again when my son was 3 months old. The same pattern ensued except the hyperemisis was even more marked (I was 5 stones something fully dressed when admitted to hospital at 10 weeks gestation). Again the sickness stopped at about 20 weeks and the remission was just as wonderful..maybe even more so..I contemplate whether that double whammy of pregnancy immune modulation had upped the ante somewhat?
Whether it’s relevant to ME or not..I had a post-partum haemorrhage at 8 days after both births.
The benefits gently waned (interestingly to me) in much the same 18 month pattern that the Rituxan research has shown for many of its’ responders.
I crashed again when my daughter was 18 months in 1990. I half rallied from that… gosh life was very hard looking back.. but sadly relapsed to housebound in 1994 and that situation has only become more grave since then..the trajectory has been continuously downward.
Personally, I think whatever pregnancy did it’s overall effect (for me) was to destabilise my body such that it’s level of function was permanently lower than it had been in the 2 decades before having children. I can’t prove that the upheaval of pregnancy changed that ‘playing field’ but it’s what I feel. For what it’s worth…
I wish they could and I don’t know they can’t somehow duplicate whatever good is happening during pregnancy for women who go into remission. Surely they know what’s happening in a woman’s body during that time.
It would be fascinating to follow a group of women with ME/CFS/FM through pregnancy, test the heck out of them and see if they can figure out why some women get better and others don’t.
Indeed! Though I know testosterone doesn’t work (apropos your latest article. ) It might be the ‘thing’ which protects men from autoimmune disease, possibly, but was deleterious for me when added as part of HRT as per Prof John Studd, Harley Street, UK.
Very interesting. Did you try adding estriol to your regimen? (Different from estradiol)
I’ve read it is the pregnancy hormone responsible for the he immunosuppression in pregnancy. I’ve just ordered a bottle along with artemisinin which suppresses b cells.
Hi Cort and everyone,
This is a super important subject and I am so glad to see this video. Like so many others, I became ill after childbirth and when I stopped nursing after 9 months and was getting ready to go back to work at one year, I got the flu which was my ME/CFS onset. My daughter was one and has never known me fully well. Mothering and support for families is so very important.
I really found these women in the video highly educated and well supported and I am so happy to see that. In the early years, late ’80s, ’90s, that type of knowledge and support was fairly non-existent. We just did what we could without a lot of medical backup. I am writing about my ME/CFS experience as well as that of others and will publish next year. This is an important area I will include more of now that I have seen this video. Thanks to all of you for the effort.
Glad to hear it Valerie and looking forward to the book 🙂
Are there any studies or personal stories on offspring of CFS patients. My biggest concern at the moment is passing this terrible illness onto my child. I also have prolonged pregnancy until I got better, but after 16 years I’ve comes to terms that it may not be possible. Such a hard decision 🙁
I don’t know of anything at all about this – sorry!
I believe my pregnancy actually cured me, halfway through I began to feel normal, stopped being thirsty all the time headaches gone exhaustion gone, just anemic after and to this day my child is perfectly healthy ( now an adult )
So thankfull
🙂 There’s a hormonal shift during that time that really helps some women with ME/CFS. For most it disappears but luckily it appears to have gotten you over the hump. Congrats!