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

[justy]

Hi Chick pea - Its a difficult and emotive subject to discuss. I have 4 children and now a granddaughter. I had my first two children before I had(knew I had) M.E and the second two while in a long remission, and later relapsed very severely and had 4 children at home aged 4 - 15 to care for.

I may have had pre M.E type illness before I had any of my children. My eldest son has dyspraxia and dyslexia and now at 23 all his teeth are falling out, despite good oral hygiene. My eldest daughter at 21 has been ill on and off for 7 years with a possible M.E diagnosis. My youngest two are so far healthy, but I have just discovered I have EDS III and my youngest son has joint pain and fatigue.

I also was better during pregnancy and then had severe hormonal depression issues after each one that made it doubly hard. I was first sick when my youngest two where 3 and 15 month old and it was a hellish journey. Eventually I went into remission and had two more children - I was very well for me at that point but still had postnatal depression.

7 years ago I had a severe relapse after catching measles from my kids who were unvaccinated. My eldest daughter also became ill and I was functioning at 30% and caring full time for a bedbound teenager and toddlers, my husband was working away from home - it was very hard for me and the kids.

My youngest daughter doesn't remember me ever being well so she has missed out on the most. I cant ever take any of my children anywhere on my own - we always have to have a carer to take us, push the wheelchair, look after me etc. I cant just take her shopping for clothes like all the other mums do and she finds this hard.

There are often times when I have to ask the children not ot talk to me as I cant cope with it. I don't see my eldest children or granddaughter very often as they live a 6 hour drive away and I cant get there on my own.

I now know I have EDSIII - undiagnosed for the past twenty years of me being ill that is genetic and I can pass to my children. I also now have a diagnosis of Bartonella and possible Lyme - which I may have had before I had the children and could have passed to them all. I would want ot make damn sure I didn't have any intracellular bacterial infections before having children - and the testing and politics around this are difficult to say the least. I have met many families on line who have passed Lyme to their children and their children have subsequently become ill - many of these people were misdiagnosed with M.E.

There have been so many times when having a family and children has been the only thing that has kept me going and saved my ;life. But equally I can never fully rest in the way I need and I am always pushing myself to do more than I should so that they have a slightly more normal life. Small children are very hard work, but so are teenagers who never seem to go to bed and have endless problems that seem to need discussing late at night when I am too exhausted to even speak.

My children are fantastic people - kind considerate and helpful. Not overly noisy or hard work, but it is utterly draining and exhausting for me every day. At one point I even considered leaving my family and going to live alone so I could heal.

I would also like to talk about adoption and will do so in another post below

 

[justy]

We would also consider adopting. That solves a couple problems

Adoption: I was adopted as a baby and have had a lot of emotional issues when younger because of this .I find your attitude slightly offensive. unwanted children do not 'solve problems' for people and should not be seen as an easier way to have a child. Adopted children need extra love and care, because they have already been so let down by their birth parents and families. It would be grossly unfair to expect an adopted child to deal with your illness if you wouldn't consider putting your own child through it.

Adopted children have enough issues of their own without taking on the added burden of being a possible carer or dealing with a difficult childhood because of someone else's illness. Children needing homes and care should be offered the best available care there is and i'm not sure a PWME is that person. This is just my won view and I know its quite radical compared to the mainstream view. I don't believe adopted children are there for the benefit of childless couples.

 

[snowathlete]

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 can only answer parts c and e as I'm male. But basically, at the point when my wife and I wanted to have children, we decided to give it two years and if I wasn't better then we would do it anyway. I didn't get better. We had a daughter four year's ago. It was punishingly hard initially because she didnt sleep for the first 16 months, but we havent met anyone as unlucky as us in that regard. Somehow we survived that, but survived is the right word; it tooks it's toll on both of us. But things are a lot easier now, though it is still a massive challenge and my wife does most of the caring - I think it would be impossible if both parents were ill - at least, impossible without help if you were both severely ill. Being a parent is very demanding, especially when one of you is sick. There are many things that I cannot do with my child, she gets frustrated that I cannot play with her much. I do what I can and work round the illness as much as possible. We manage though and havea great relationship - she is having a cuddle with me right now cause she has a cold.

Having her was absolutely the best thing to ever happen in my whole life, and it is totally worth it. I would definitely do it again.

I don't know the answer to question b. But of course we have thought about this. I would think there is more chance if the mother is ill, but I don't know. I'd want to talk to other mothers who have had children were I in that situation. There is no scientific evidence that I know of to show an issue here, but that doesnt mean one doesnt exist.

 

[chickpea]

Adoption: I was adopted as a baby and have had a lot of emotional issues when younger because of this .I find your attitude slightly offensive. unwanted children do not 'solve problems' for people and should not be seen as an easier way to have a child. Adopted children need extra love and care, because they have already been so let down by their birth parents and families. It would be grossly unfair to expect an adopted child to deal with your illness if you wouldn't consider putting your own child through it.

Adopted children have enough issues of their own without taking on the added burden of being a possible carer or dealing with a difficult childhood because of someone else's illness. Children needing homes and care should be offered the best available care there is and i'm not sure a PWME is that person. This is just my won view and I know its quite radical compared to the mainstream view. I don't believe adopted children are there for the benefit of childless couples.

I agree, that adopted children are just as important as having a biological child. The only point I was making about it 'solving some problems' was that I wouldn't be PASSING my illness genetically onto another person. That's it. I don't think any aspect would be easier, in a lot of ways, I think it would be harder.....Sorry if I offended you, or adopted children in general, that makes me feel awful. My sister in law is adopted and I think she is the most amazing person! I know the one thing we can give a child is soooooooo much love. But again, I would never want to make a child suffer, as a result of my cruel illness.

 

[chickpea]

Again, thank you all so much for your replies! I am so touched to see both male and female perspectives. I can honestly say I have found this more helpful and informative than any doctor visit I've had about this subject! I hope this thread will help others in this situation.

 

[justy]

Thanks Chickpea for your clarification on adoption.
Would I be without my children? no absolutely not. would my life be easier without them? in many ways yes. but they do enrich my life enormously. My two eldest children double up as very good friends and we have always been close. They cant do much to help as they have their own lives to get on with, b ut my son calls me for chats often and my daughter always thinks of me and posts little funny things for me on FB etc.

I guess I feel awful for my daughter who is ill - but I didn't know I had M.E when I had any of them as it was misdiagnosed for years and then I was in remission, so I don't know if I could purposefully think about passing things on and feel OK with it.

As I said, knowing what I know now I would want to be rigorous about making sure I wasn't passing on anything that could be treated or had been misdiagnosed.

Like snowathlete above my first child never slept, had terrible colic and cired non stop for about 8 months- at one point he spent months at night sleeping for one hour, waking and screaming for one hour, on and off like that. In the day I could never sit down and rest because as soon as I did he would start screaming again- I had to take him out for long walks just to get any respite.

I'm not trying to put you off - but this is he reality of some babies. Then once they can crawl they have to be watched the whole time they are awake - very few babies will play happily quietly alone for long stretches of time. If you are functioning at 40% say then you would need a more or less full time carer for your child until they go to school.

My husband has had to do all the outside stuff for the kids as well as working full time and caring for me and doing all the housework garden work etc. He does the weekly runs for dance classes and sports events etc - he goes to all the school and dance performances, he goes to all the parents meetings at schools. I go when I can with him, but can never go alone so it doesn't help him out. Your husband would have to be comfortable to take on a full time caring for child role as well as what else he does now. I have been between 25 and 40% functioning over the past few years and there is no way, knowing what I know about children and babies that I could contemplate having a baby and being this sick unless my husband was at home all day to look after it.

Having said all that, my family give my life a meaning and purpose that it would not have otherwise. My children are fantastic human beings and I am proud of how well I have brought them up and how they contribute to their world around them.

 

[fds66]

Sent you a message. Should be in your inbox

 

[Alea Ishikawa]

@chickpea - It might help to read this thread and this thread.

ME/CFS might have a genetic component, as a relative is more likely to be diagnosed with the disease than not. Also, I remember reading something like 35% increased rate between twins. If you have an infection on top of that, that might be transmissible, as well. I'd keep in mind that you might have greater difficulty or be taking care of them for longer than initially planned, if things go awry.

An easier pregnancy might happen about 1/3 of the time. Some women experience a reduced level of functioning after pregnancy. One woman was said to become severe for 20+ years afterwards.



Caledonia talked about genetics, preparation before conception, and having a mom with ME/CFS, here. SOC and her daughter are both PWCs here. Taniaaust1 has also been ill since her daughter was younger. Another story here.

I would suggest a good support network, and for your husband to be prepared to act as a single parent. With the new responsibilities and sensory information, you might be physically down a lot. (One thing I did not factor in when I got married was the additional energy expenditure just doing the basics. So, I imagine a child would be a higher "cost.") The extra stress from both illness and a new child will likely take a toll on your relationship with a spouse, as well.

Like other posters said, I'd weigh the effort required for daily life. If you have light and sound sensitivity and need uninterrupted sleep, will you be able to address nightly wailing? How would you get the child to daycare/school, doctor's appointments, events? How would you handle shopping, extra cleaning, laundry, meals? How much are you currently able to take care of yourself - and how much could you take care of yourself with a child?

I've also heard about how a child can be resentful toward the parent for passing on (a predisposition for?) their condition. Adoption could bypass genetic issues, but there's still the energy expenditure...



Personally, I've decided to avoid having kids until I've gotten better (making an assumption here). If a pregnancy happens in the meantime, my husband will be primarily shouldering the responsibility and we'd also be depending on support from the in-laws, who live within driving distance. We've also considered adoption, but I would need to be well enough to take care of a child, there, too.

If I don't get better, we won't have kids. It's something that's very hard for me to accept while I'm still in my 20s. I'm not gung-ho about having a kid, but it's something both my husband and I wanted to do, and that scenario might be gone due to the illness - but what can you do, you know? It might be an opportunity for something that wouldn't have been considered otherwise.

We're still holding out on the hope that I might somehow get out of this or my condition might significantly improve. I'm still waiting on the results for Lyme and co-infections testing.

 

[chickpea]

Thank you all again so much for the comments.
@Alea Ishikawa I found those posts soooo helpful. My husband and I read them together and it was interesting to see how another couple was in our situation. I wonder what they ever decided to do? At this time, I feel me having a child is off the table. We will look into adoption and see if that is even a possibility with perhaps an older child. But I truly am grateful for the honesty that was shown on this thread.

 

[PennyIA]

I would like to ask if anyone:

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?

e. If you had to do it all over again, knowing you would have this illness, would you have a child?

I had my son approx. 18 months before I became ill... so have some input, though I can't answer all your questions.

He was perfectly normal child, semi-hyper, full of curiousity, etc... until he hit 9 yrs of age. Now, we'be been through 24 months of 'fatigue', 'feeling ill', no explanation - so while he does seem to have it, he didn't catch it as a small child.

I was exceptionally lucky when he was a toddler, able to still send him to the babysitter during the day (which gave me time to sleep during the day), and in the evenings/weekends, he played quietly next to my bed. When he'd get tired, he'd crawl up into bed with me to sleep. The only things I had to deal with was feeding him. When my mother found out I was crawling into the kitchen to fix him meals, she stepped in and helped until I got past the worst of the crashes.

As he got older, things got a little more challenging... and I still worry that he doesn't get enough time one-on-one with me. As even though I'm no longer house bound, I'm still in my bedroom trying to conserve energy during the majority of my free time. He cooks a lot of meals but doesn't help out with other things around the house that could use some help.

While I could never say I wouldn't have had him, if I had known this in the past... the truth was - he wasn't planned to start with. And when I first found out I was pregnant (and this was before illness) I wasn't happy about it. The truth is that the love overcomes a lot. But if I had a choice, I'd still have him, but be healthy (let's face it - that's what we all want, probably).

There are a few (very few) positives about raising a child while ill. I don't take ANYTHING for granted, my time with him is limited and precious and we're really close as a result. We really focus on only what is important and a lot of that other stuff that deals more with trying to keep up appearances just slides away. And he's very attuned and compassionate. Who knows if he would have been otherwise, but if I cry out from sudden pain, he's at my side, concerned and helpful and trying to take care of me. His compassion and empathy is extra-ordinarily sensitive.

 

[Kenjie]

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...

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.

----------------------------------------------------------------

Hi im 34 and from New Zealand. I had a baby and after labour developed an underactive thyroid which has resulted in longterm CFS. My son is now 3 and a half and I have managed. There is ALOT I'd like to chat with you about I have private messaged you. I'd really like to hear from you because I have some excellent advice that can help you on your journey. I don't want to post too much hear til I get the awesome opportunity to exchange ideas. - Kendra

 

[AndyPandy]

@Kenjie you can send a private message on PR. This is called a "conversation". Go to inbox at the top right of your screen.

Welcome to PR!

 

[Kenjie]

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.

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...

@Kenjie you can send a private message on PR. This is called a "conversation". Go to inbox at the top right of your screen.

Welcome to PR!

Thank you

 

[Kenjie]

Thank you

@chickpea sent you a pm. I look forward to helping you

 

[redaxe]

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.

Have you considered having your eggs frozen at a fertility clinic? That might buy you some more time. Apparently its a regular procedure for women of a child bearing age that are going to undergo chemo for instance.

Has anyone else considered that option?

 

[alexa]

I became sick 7 years ago and now have a 7month baby. It was a very hard desicion, i did iv antibiotics and got the go ahead from kdm. Pregnancy was great, i felt so much better and even now nursing i feel OK (compared to before) but it is hård!!!! I feel guilty a lot, my husband does a lot and i still struggle. Some days i just wanna give up. IF he (my baby) is healthy then it was worth it, but i am not sure i would recomend it. I worry so much for his future and my illness, i need the support of my husband but we also need him to work full time to make money. But before baby i felt so alone and life felt meaningless, now i feel like a proud mom! But the gamble might be too big. We are not having any more children and honeslty i feel a bit irresponsible for having one, but my longing was so strong. I would recomend becoming an extra aunt or something, but god knows i didn,t follow my own advice. Big hugs to you!