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Reality - vs - actually having a child if you have ME/CFS - decisions.....

Discussion in 'General ME/CFS Discussion' started by chickpea, Mar 23, 2015.

  1. Hi there,
    I've been ill with ME/CFS for 13 yrs and have been waiting to have a child until I got better. Well, this has not happened, and now as I turn 40, my husband and I are realizing we must make this very difficult decision.

    I would like to ask if anyone:
    a. Has gotten pregnant AFTER already having CFS/ME and what their experience was like.
    b. Does anyone know if you can pass on this disease to your child?
    c. Are you a parent now and what raising a child is like with having this illness?
    d. Has anyone ever adopted while they've been ill?
    e. If you had to do it all over again, knowing you would have this illness, would you have a child?

    I have been battling this decision for years and it breaks my heart to think this is yet another thing my illness has taken from me. My biggest fear is that I could pass it on to a child, and my husbands biggest fear is that I would get sicker and relapse. Unfortunately, we also do not have any additional support system for child care. (ie: Local family or paying for a live-in nanny etc).

    There is a big part of me that see's this as very risky. Yet another side of me that wonders 'what if it is ok?' and I could fulfill this one dream. I just don't want to make the wrong decision.

    We would also consider adopting. That solves a couple problems, but it still remains to be seen if I could actually manage to care for and raise a child with the limited energy that this illness allows. My husband needs to work full time, so realistically, that would fall primarily to me. I range between a functioning average of 35-65% depending on my output and catching bugs.

    I would love to hear from the community their experience and knowledge, so I can finally make this decision once and for all.
    Thank you so much in advance, much support to all those who have to deal with this terrible illness...
  2. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
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  3. Valentijn

    Valentijn Senior Member

    If you're struggling just to take care of yourself, then I think it needs to wait. At least, that's my current decision for myself :p It wouldn't be fair to expect my fiance to take care of both me and a baby, and I know I couldn't take care of a baby at all at this point.

    If I don't recover before my ovaries shrivel up or whatever, then I'd consider adoption, fostering, or a pet when I am well enough.
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  4. daisybell

    daisybell Senior Member

    New Zealand
    Hi @chickpea
    I think only you and your husband can answer this...
    How badly do you want to have a child?
    I always thought I would have kids, and now I'm in my 40s and I don't and now won't. I am very sad about that, but there is also a part of me that thinks that it wasn't meant to be. I can't imagine giving a child/children a fun upbringing in my current state of health and energy, and so although this is a huge loss in many ways, it is also perhaps a good thing...
    I have made a decision to try to be a good auntie, neighbour etc and to enjoy the children around me, and to try to let the regret go. I can't change the way things have turned out, and in fact I wonder if my autoimmune disease has in fact affected my fertility. I'll never know either way now.
    I know that adopting or fostering is also not a good option for me currently.

    Sorry, I can't really answer your questions but I just wanted to reply as your post resonated strongly with me. Best of luck with whatever you decide.
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  5. Cheshire

    Cheshire Senior Member

    As daisybell said, it's a very personal decision to make.

    Just my own experience. My sons were 8 and 10 when I became sick. They were quite autonomous, I don't know how I could have done if they had been younger.

    I’m very grateful to them, they are adorable. But, it's often difficult; we can't do anymore the things we used to do. I miss so much playing with them, walking... My family is very supportive, and they do lots of those things with their aunts, uncles and grandparents, but they live far away.

    And on a day to day basis, it's also tough, I sometimes struggle to help them do their homework. I remember once telling total nonsense about fractions to my younger. He asked "are you sure mummy?" Yes yes. And an hour later I realized I had told him total rubbish. That's really frustrating. I’m not offering them the childhood I dreamt of giving them…

    I’m as present as I can, but my husband often feels like he’s a single father.
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  6. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I agree with Valentijn, if you need to seek the help of your partner already, it's probably not a good thing to have a child. Its hard to explain to someone who doesn't have one the time and energy which need to be put into just even one child and not being able to rest when you need it (if you are a person who crashes if you don't rest when you need too) is quite damaging without support of another to take care of the baby/child.

    Now for some hard facts (as much as can be gathered at this point of time)

    Those who have ME, often will have change during pregnancy, for some their ME actually improves during pregnancy while others may have a difficult pregnancy. Anyway, the hormonal shifts do often change ones ME in some ways. So anyway you could fly through pregnancy and have a great time there.

    The answer to that seems to be YES. One well known ME specialist (I've forgotten now which one it was) has stated that he's noticed that our children have a 25% rate of getting ME themselves.

    It may not just be the ME you need to worry about, one thing I and some others at PR have noticed is that we seem to be carrying a far higher rate of having children who have Autism or Aspergers and I probably do not need to tell you that if that happens, the child then will be even harder work maybe even into adulthood. (One of my children has Aspergers, she was a massive issue growing up, running away from school, safety issues, prone to violence if something upset her etc etc)

    If planning for a child, you need to also consider how you'd manage if you got one of those worst cased senarios which may not be that uncommon in us. You also will have to make major decisions like "will I get my child vaccinated knowing she or he may be at risk of ME".

    Another thing, those of us who have ME often have issues we haven't realised yet and these too can impact on our children eg in my case I have a double mutation of MTHFR (a methylation issue). This issue caused my youngest child to be born with a rare severe disability (similar to spina bifida).

    My eldest child though I didn't have ME at the time had severe issues too through my body even before ME obviously wasn't right. I got a severe HPV outbreak while pregnant and was then advised to abort (which I refused), my body couldn't fight it and it was just getting worst and worst.

    When I gave birth, this then was transmitted to my baby which then appeared in her throat and over her vocal cords when she was a child (she is lucky not to have been left unable to talk). Her body couldn't fight this either and it resulted in her having to have delicate surgery to stop her airway from blocking every 2-3 months for YEARS on her vocal cord growths. She had surgery 17-19 times.

    I'm telling you all this to point out to you our bodies are not healthy!! and it may be why we got ME in the first place. The odds of having a child with each of the issues my two children had was 1:25,000 for one issue and and 1:50,000 for the issue in the other child (and then one also has Aspegers too).

    I just remembered something else the ME specialist said, he said he'd had a couple of his ME patient give birth to babies missing part of their brain I think it was (it was something really major, extremely very rare deformaties).

    My eldest daughter was around 8 when I first got ME, my other was 2.5 years younger. After a year of ME, I crashed and became completely bedbound and my daughter who was by then about 9-10 years had to then become my carer. I couldn't look after either child. This really messed up my younger daughter who already was a high needs child, as an adult she has now chronic depression. Her depression started in her childhood...and I think having a mother who was completely unable to take care of her (so she then felt unloved), may of played a part in this.

    Having had two children with 3 very serious medical conditions all got from my body or inherited from me when I actually had thought I was healthy at the time!! (my youngest needed a wheelchair up to high school at times, she needed several surgeries too for the deformaties a MTHFR mutations had caused). If I got seemily healthy and if wanted another child, I'd adopt, there is no way after giving my children all those things would I do otherwise.

    And no, even if I knew I could have healthy children and I was in remission, there is no way I'd risk even adoption.I had a remission once but got ME back and it is terribly cruel on the children if there mother is bedridden all the time and they cant be taken care of. With this disease one cant trust it will stay at whatever level it is at now. (I had severe noise intollance so my children couldn't even be noisy and act like children or I'd go into seizures).

    Note, my youngest child as an adult hates me as she blames me for her disability and says I should of aborted her (I didn't even know she was deformed till I gave birth as they had some how missed on the scans her deformaties including half of one of her spinal bones). I do not even get to see my grandchildren. This situation causes me a world of pain.

    Having children with ME is a risk. The last person I told all this too, she ended up having a son with autism. If you don't have family members other then just your husband to fall back onto if you get sicker or if something goes wrong. I'd say don't do it. The risk is too high to not have others (aunts, friends, family) to be able to full back on if needed.

    Though I had the two children, I feel very sad as ME robbed me from being able to enjoy things with the children, not being able to take them out and do fun things etc and completely destroyed me being able to have a good relationship with one of them (my ME flared up so bad that the kids couldn't even hug me as it caused me too much pain).

    As the other said, it robbed me of being able to give them the childhood I would of liked to give them.

    Another thing which happened which I forgot to say is my daughter ended up dropping out of school before even legal school leaving age as I just was too sick to keep up with her health stuff and turned out she was unable to see the blackboard properly (I went to great effort to take her to a childrens eye doctor who said she was faking it and I was too sick to try taking her to another doctor, so her sight issue wasnt picked up till adulthood). I was struggling too much just to survive myself without having to be responsible for others.

    The ME dreadfully impacted on my children and I
    Last edited: Mar 24, 2015
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  7. GracieJ

    GracieJ Senior Member

    What a tough life decision. I had children not knowing I was in the "pre-stages" of this disorder. I became quite ill when my children were 2, 5, and 8. It took a long time for me to grieve the losses that came, mostly because there was so little understanding or recognition of what was wrong or how long it would really last. Maybe that would have been different with better understanding.

    Some women report improvement during pregnancy, but I would not count on it. I always did wonder, though, why I had such easy pregnancies. The high progesterone levels made me feel so much better on all fronts. Of course, that would end, and I had bad postpartum depression from the hormone chaos following, lasting two years with each child. How much this was related to developing ME/CFS is unknown.

    You would need to be prepared to miss out on a lot of things with your children, quite honestly.

    I remember trying to be supportive to my young son as he did cub scouts. (Three years into sickness.) The group went swimming one time, and I came along, not at all understanding several pieces of this disorder. I had heat intolerance, for one thing, but did not know it. I already knew going in the pool was out due to chlorine being intolerable, so I stayed out. There was no shade except a mini pavilion with a slatted roof. I sat there with my water bottle and came close to passing out.

    Junior high school parent-teacher conferences were set up for the parents to attend all the student's classrooms/teachers 15 minutes each in the evenings plus a general session plus transition time, so the sessions were a numbing 2 1/2 hours after being at a job all day as a single mom. Not attending would only have been possible with support and recognition of the issues.

    Dance recitals and soccer games were equally grueling tasks.

    You have your work cut out if you do decide to become a parent. You also have a lot of joy ahead if you do, as difficult as it would be. I have grandchildren now, and cannot imagine life without those little people.

    I do dread trying to explain to them why Grandma cannot make their soccer games or plays or recitals. And two weeks ago, my sweet six-year-old granddaughter was hospitalized due to high fevers and uncontrolled vomiting. She and I are close, and it was a difficult thing to not be able to rush to her side, mostly because of logistics. She asked why I was not coming. (Distance, travel time, my work schedule.) My daughter explained to her that I could not be exposed to sickness. Oddly, I had forgotten that piece, probably the most important one for all of us.

    That daughter is 32 and showing signs of developing ME/CFS. She currently is a single mom with two young children.
    Last edited: Mar 24, 2015
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  8. CantThink

    CantThink Senior Member

    England, UK
    I understand where you are coming from. I'm in a similar boat mentally (in my mind I'm often pondering this and have talked about it extensively with family and my other half). I'm mid-30s.

    You might find this helpful:



    I think your biggest challenge, whether having a child or adopting, would be the fact you'd have no practical support (or safety net) as you said you had no local family or ability to pay for a mother's help/nanny. I personally would be extremely hesitant in that respect simply because even healthy women struggle to cope on their bad days, and it is possible that their bad days might be the same as or similar to our good days!

    Also take into consideration that as a mother of a baby or toddler, you will have to be 'on' the whole time... You are on alert constantly and that is exhausting because you can't just switch off (even if the baby is napping) as you would if you didn't have that responsibility. You have to do everything for that 'being' for quite a long time.

    I am conscious that when a baby goes into the toddler stage, they are on the go most of the time (if not all the time) they are up. So you'd have to be prepared to mentally stimulate them as well as meet their needs to physically move and stretch their muscles. They can move pretty fast and to ensure they don't hurt themselves you have to be able to keep watch and move quickly too if necessary. These things require energy both mentally and physically. So think of undertaking that 5 days a week (assuming your hubby can relieve you on a weekend).

    Perhaps you'd also get some stretches where a family member might come stay with you and help out?

    Obviously disabled women do have children. I think the thing is - the ones I know of, or have seen, have had a support system in place to enable them to care for the child effectively. In the case of M.E., I think these considerations include not only ensuring the quality of life of the child, but also taking steps to ensure the current state of health of the parent is not jeopardised - I.e. that it does not cause a relapse or a permanent worsening etc.

    I'm sure that mothers with M.E. figure out adaptions and ways to do things that are easier. There's only so much room for manoeuvre though, so undoubtedly there would be a big impact on you.

    Think about the extra things you'd need to leave the house for - In the baby/toddler stage it is normal for mothers to go to group activities for children and to meet other parents there - is that something you could do? When the child was old enough to attend a playgroup or preschool (which would give you a break) would you be able to afford it and get the child there? Would you be able to push a stroller and go for a walk? Also you'd probably need to take the child for medical checks/appointments etc, which you might need your husband to take time off work for so that he could help.

    If you do manage to get out the house with the child, you'll be juggling a lot of 'stuff' - all the things a child needs, plus having to help the child with shoes and coat etc. Plus when you go to have a drink, snack or meal, you'll be taking care of the child first in ensuring they can drink their drink - straws into cartons of juice type of stuff - and eat their food (or earlier on feeding them). That in itself can be quite exhausting as it's all extra little activities you currently don't do that will take up energy and you can't always attend to yourself if you are feeling very poorly. That's when an extra pair of hands just really help! I even have helped friends out with their children (and my friends are healthy) and they are so grateful to just have moment's respite!

    Personally, I know I could only realistically rear a child if I had either the ability to pay for someone to help me during the day - a cleaner, and a part time nanny or mother's help - or lived with my parents. I think it is the relentless aspect that would be extremely hard. I haven't decided no - I'm on the fence, but prepared it might not happen.

    Have you had the opportunity to care for someone else's child in the baby and toddler stage? If you can 'borrow' one for even a few hours, it will give you a taste. I have been able to do this with a 2 month old and a 4 year old.

    I know I've seen a few threads on here about other women having babies so perhaps search and read what they say. I believe there are also some online blogs of women with M.E. and children.
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  9. AndyPandy

    AndyPandy Making the most of it

    @allyann might have some useful comments.
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  10. GracieJ

    GracieJ Senior Member

    In answer to the last question, would I have had children knowing I was ill? Probably not. I think I would have grieved for years.

    I have an elderly spinster aunt who became ill with something in her teens. No definite diagnosis was ever given, but she seems to have some variant of this. She made a very definite decision in her young years to never marry or have children. We always thought it odd. No one has ever really understood her or her life choices. She obviously recognized her limitations.

    @justy is another great resource here. She has raised four children while ill. I do not know her full story.
    Last edited: Mar 24, 2015
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  11. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    That worry never goes away. I too carry it for both my female children and now my grandchildren "what if they get ME?" . It's a scary thing wondering if and when its going to strike and if my daughters ever get it esp since one of my daughters showed when young that she couldn't fight a common virus and my other child I think also has EDS so possibly even more predisposed.. "Who will look after their children if they get ME if their husbands need to work?".

    We have a lot of ME now in my family with my 2 cousins and a sister (I worry about my sisters children, they often have issues).
    chickpea likes this.
  12. allyann

    allyann Senior Member

    Melbourne Australia
    Thanks @AndyPandy for the tag.

    @chickpea - You can read my blog while I was pregnant on how it affected me.

    My son is 3 now and it has been a hard road. My Hubby has become our full time carer as my son has Autism too. Whilst I have suffered health wise, the love and joy we get from being parents far out weighs the toll it has taken on my health. We have only been able to do it as my husband is a wonderful and supporting father and husband. I have income insurance which also helps.

    Feel free to pm me if want to know more.
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  13. allyann

    allyann Senior Member

    Melbourne Australia
    Ps. I was 39 when I had my son
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  14. maddietod

    maddietod Senior Member

    East Coast, USA
    There are 3 sides to this: your needs, your husband's needs, and the child's needs. I think the need/desire for a child has to be put to one side at first, to honestly look at your ability to have and raise a little human. Other peoples' experiences are somewhat useful, but the variations in our energy levels, noise tolerance, ability to keep up with chores that have to be done, etc......are huge.

    I think it all depends on the depth of your support system. If your husband has to go work while you go through a 35% functional spell, the baby will not accommodate you.

    I got mild CFS when my 2nd child was about 2. By the time I was diagnosed my CFS was still mild, but I had 6 children. By the time I needed naps every day, the older kids helped with the younger ones. None of my kids has CFS.

    Because I have still only progressed to moderate CFS, I would absolutely do it again. I have never had a serious crash or a major setback, though. I was always able to take care of everybody's needs. [My husband was never a support for me, and we divorced when the youngest, twins, were 5].
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  15. redviper

    redviper Senior Member

    As a fairly young guy, I absolutely hope to have children. During those frequent days where I've laid bed-ridden in pain, coping with the loss of my life, the thought of my future children has been one of the main things to motivate me through. I understand that it children will only cause me more exertion, but they will also bring me a ton of joy, so it will definitely be a happy moment for me when the time comes.

    To be honest, when I got sick (26), the fear of never getting married and having children was heartbreaking/terrifying. It felt like my entire future had been ripped out of my fingertips.
    Last edited: Mar 24, 2015
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  16. I can not thank all of you enough for sharing. It is so helpful to know others have either have been there or are there - and simply get why this is so hard. Today, I feel that actually having a baby is very risky - for my baby, for me, for my husband. I didn't mention earlier, but my mother has FM/CFS so I feel I am at even higher risk of passing it on.

    This still leaves me with the question of adopting.
    Does anyone have experience with this and having ME/CFS? I am not even sure if I would qualify to adopt with this illness. Adoption obviously means other risks, but I would also be able to adopt a child say 3-6 yrs of age instead. My main concern here would be all the germs they would bring home, and simply if I am up to task of taking care of another person full time - even with the breaks of school etc.

    It's such a horrible, relentless feeling...
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  17. I can totally relate. I can tell you though, that I did find a very special man after I was ill (I had gotten sick when I was 28) We got married and are very happy still 5 yrs later. I really doubted I would ever find someone who could stick by sicky me, but we are more than just our illness and have a lot to offer as a spouse.
  18. redviper

    redviper Senior Member

    Agreed, I am also very lucky to have a wonderful fiancée who has supported me throughout this illness. I'm sure your story will serve as an inspiration for many of the people here who are single and searching. I'm glad that you have found someone who makes you so happy :)
  19. EsmeDolce


    I have an 11-year-old stepson who lives with us on the weekends, and my entire life revolves around those days. I love him dearly and he's very understanding of my limitations, but it takes a lot of energy to take care of a kid, even when you stick to quiet, low-impact activities. I push myself to stay upright and attentive for the two days he's with us, then I crash and spend the rest of the week recovering. And then the cycle starts again.

    I love my family more than anything and it's very rewarding to have a child. For me, it's totally worth it to have him in my life. That said, there is no way I could have a baby or be a competent full-time parent, at least not at this point. I already feel constantly guilty for all the things I can't do for my boy, the school functions or games I can't attend, the times when I can't do fun things with him. I know that I cannot be the parent I would want to be to a baby.

    If you decide to have a child, I would suggest working on building a strong support team. As others have said, raising a child is a relentless responsibility. Inevitably, there WILL be times when you need a break, and you will need a backup plan.

    Think about how you feel on your worst days, and how you would handle a child on those days, especially if your husband has to work. Do you have friends in the area who would help babysit? Could you afford a housekeeper or babysitter once or twice a week? Is there a daycare or recreational center where your child could stay some afternoons?

    My thoughts are with you!
  20. msf

    msf Senior Member

    HI, I have no experience in this area but I have thought about this a bit. I have just turned 30, and am male, so I don't feel in any rush to have kids, in fact I'm not even in a rush to be in a relationship again (this can also be tiring, in my experience). I guess it might be different if I was already at that comfortable stage in a relationship, but getting there seems like too much work at the moment.

    Even if I was in a position to have children though, I think I would wait for two reasons. The first is that I only have enough energy to look after myself at the moment. The second is that my father also had ME, so I wouldn't want to have a child before we know more about heredity in this disease.

    I understand though that my take on this as a 30-year old male who has been ill for just over a year will be very different to say a 40-year old woman who has been ill for longer, so I would agree with the posters above that it is a very personal decision (although you should probably ask your partner for their opinion too!)

    Oh, I have just realized that I do have some experience of this, having been brought up by someone who had ME. I think if your ME is manageable, i.e. you are able to work, as my father did, or you able to do a lot of housework, without making your condition significantly worse in the long term, then I think it is possible to raise kids well whilst suffering from ME. I think you have to rely on your spouse more than normal, but if they are willing to pick up the slack when you need to rest then it can work, although I'm not sure how this affects your relationship with your spouse.

    I think this decision is a really tough one, since not only do we not know how much heredity contributes to your risk of developing ME, but even if you assume that there is some risk you don't know how severe the child's ME might be. In my own case, I had 30 (mostly) good years before I fell ill, and apart from the first 3 months I was ill I haven't been truly miserable, so the only thing I feel slightly resentful about is that no one (including my GP) told me that there might be a hereditary risk of developing the disease.
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