• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Too ill to have children

Messages
5
I became ill in my early 20s and now I'm heading toward 40 with my health getting worse and worse all the time. I think I am now too unwell to cope with a relationship or even making a child! But I would have really loved to have a kid.

It's another massive layer that adds to me feeling my life has no purpose or meaning. It's on my mind a lot (that's why I'm writing this in the early hours) but I've never really spoken about it to anyone. I try to avoid children and people with children, videos/movies/stories about parents and their children because it makes me so sad to be missing out on such a huge life event against my will.

Of all the things this illness has taken and all the potential stuff that I've lost before I even could have it, this is the hardest.
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
One of the hardest things about this illness is when it takes away your choices. Most people can choose whether or not to have children, and having that choice taken away must be incredibly painful.

This is an issue I struggle with quite a bit. I am recently married (somehow I found the one guy on Earth who never seems to mind that I'm fatigued), and hoping that I might be able to have children. But I'm worried that it's not realistic given my health, and that it wouldn't be fair to my future children (not to mention my husband) because I'm so incapacitated.

It just sucks. The only positive I can offer is at least you're not alone in your feelings.
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
But I'm worried that it's not realistic given my health, and that it wouldn't be fair to my future children (not to mention my husband) because I'm so incapacitated.

It's not fair to children, and I can tell you from experience...they don't really give a fuck about that. What children do care about is....well,...whether or not their parents care about them.
 
Messages
5
It's not fair to children, and I can tell you from experience...they don't really give a fuck about that. What children do care about is....well,...whether or not their parents care about them.

I understand what you are saying but I'm not sure it's always that simple. From my own experience, I have to be very selfish to stay as well as possible. I don't have the energy to give to a child no matter how much I would love and care for them. Maybe they'd understand but it'd be heartbreaking to be shut away in the dark while my kids had to play else where in hushed tones.

I'm worried that it's not realistic given my health, and that it wouldn't be fair to my future children (not to mention my husband) because I'm so incapacitated.

I know someone who had her child while very ill as a single parent, I think she was most bedbound at the time. She had help from her local authority and social services and now her grown-up daughter has a daughter of her own :) There are definitely ways to make it more feasible it'll just be harder than if you weren't sick- just like every other thing with this illness. Even if you do have that choice, it's still a very difficult one to make.
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
I would not be so sure.
Well I am certain.

However, I am even too ill to have grandchildren.
Then your too ill to prevent it.

I understand what you are saying but I'm not sure it's always that simple. From my own experience, I have to be very selfish to stay as well as possible.
I am very selfish too, but that's not all I am.

I don't have the energy to give to a child no matter how much I would love and care for them. Maybe they'd understand but it'd be heartbreaking to be shut away in the dark while my kids had to play else where in hushed tones.
It is heartbreaking, as is even contemplating forgoing this experience in life. That's why I'm sharing a very personal part of my life that is precious to me. Children are much more resilient than adults in this situation. They lack a rigid ideology.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
I think you are being too hard on yourself.

Having kids is a societal norm that started with religion and then was pushed by advertising companies as a way to sell products. Realistically, having kids is a major pain in the a$$ and money drain. Parents often lose sleep and suffer financial stress. Whose to say how your kids would have turned out? Could have died in a train wreck or grown up to be a junkie.

It’s socially acceptable for parents to complain about parenthood. They are allowed to lament their lost freedom. They are allowed to say how wrecked they are, how busy, how sleep-deprived. They can bemoan the chaotic state of their households and blame it on their kids. And then — as if to assuage any guilt — they are allowed to say they wouldn’t trade it for anything, to say how happy and sparkly their messes are, how precious.

On the child-free side, it’s socially less acceptable to gloat about our European vacations, our restful evenings at home, our tidy living rooms with breakable items on low coffee tables. If we do enthuse about an activity we know our parent friends can no longer participate in, we are achingly aware of their side-eye, their evaluation of us as delusional for attempting to find meaning in these nonfamilial pursuits.
https://www.huffingtonpost.com/entry/child-free-in-middle-age-40s_us_5bcf5742e4b0a8f17ef11f06

2017 saw the lowest number of births in 30 years, according to a National Center for Health Statistics report this past spring, in a 2% dip from 2016. And the fertility rate for women aged 15 to 44, also a record low, declined 3% from 2016 to 60.2 births per 1,000 women.

Why the shift away from babymaking? Among adults aged 20 to 45 surveyed this summer by Morning Consult for the New York Times, 36% of those who said they didn’t want children or were unsure cited wanting leisure time; 34% said they haven’t found a partner, 31% said they can’t afford child care, and 30% said they had no desire for children.

https://www.marketwatch.com/story/w...e----and-why-thats-completely-fine-2018-10-09
 
Messages
5
I am very selfish too, but that's not all I am.

Nobody said that's all you are, why the aggression?

It is heartbreaking, as is even contemplating forgoing this experience in life. That's why I'm sharing a very personal part of my life that is precious to me. Children are much more resilient than adults in this situation. They lack a rigid ideology.

Sharing your personal stories is fine. Assuming it will be the same for everyone else and dismissing other points of view is not.

In my experience, which i believe is just as valid as yours, children pay for their parents problems much more than the parents realise. A large number of kids i went to school with were bullied horrifically because their parents were sick and/or disabled. Just because you think children are more resilient it doesn't mean all of them are.

If you think you can cope with making and raising children then good for you, crack on. I wrote my piece because there is no way I could do it even if I had someone to make babies with, I am too ill and I have no choice. Some people ARE just too ill...I feel a bit weird having to state such things on a forum for an illness like M.E. where everyone has such varied experiences with even just that one aspect of their lives.
 
Messages
5
I think you are being too hard on yourself.

Having kids is a societal norm that started with religion and then was pushed by advertising companies as a way to sell products. Realistically, having kids is a major pain in the a$$ and money drain. Parents often lose sleep and suffer financial stress. Whose to say how your kids would have turned out? Could have died in a train wreck or grown up to be a junkie.

Wow. Are you serious? Did you even read what I said? If I had a choice, I would have a child. If I had a choice I'd go on those European vacations too but I can't do any of those things. I can't work, I can rarely get out of bed. I have no problem with people choosing not to have children, I was lamenting my distinct lack of choice in the matter due to being unwell, I'm not choosing to be ill instead of having children.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Last edited:

Belbyr

Senior Member
Messages
602
Location
Memphis
Don't rule out adoption, I have 6 adopted cousins and they are viewed just as biological family. Here is a pic of some of them. And like one leading CFS researcher said, she thinks there is a great Rituximab therapy for about 30 something % of CFS patients that fit that subgroup and she believes she has the answer for some of the other subgroups. Maybe in a couple years we will have those answers after these phase I and II trials...
9vqhW5q.jpg
 

wonderoushope

Senior Member
Messages
247
I understand totally where you are coming from. I’m around the same age and have always wanted children but I just wouldn’t be able to cope. I have had to let that dream pass. I also get sound sensitivities, so crying babies and me would just not work. I would have meltdowns which would not be fair to the child or me. It would be lovely in theory but reality and logic brings me back to earth. For some reason knowing all this makes me come to terms with it all.

I personally just have decided it wouldn’t be fair for me to bring a child into the world. My parents really should’t have children and I just have to be be responsible as I don’t want to be like them. I had no stability growing up and I promised myself I would never have a child if I couldn’t offer it stability and financial stability. But that’s just me and how I am wired. I’m emotional but more logical and sensible in nature. My housemate who is my good friend agrees a child just would not be a good idea for me. I’ve just decided on perhaps getting a dog, but even with a dog I am not sure I could cope with. I would have to find the right temperament for it to work. My housemate agrees I would have to find the right temperament for it to work for me. That’s why I won’t get a puppy as it would be too hard to determine its adult temperament but also a lots involved in rearing a puppy.

One thing that helped me being not too depressed about it all is that when I was well I actually worked as an assistant in a childcare place (as I wanted to see if I would suit being a kinder teacher). Although the children were absolutely lovely I actually found out I was happy that they were handed back to their parents at the end of the session. That was not something I was expecting. I thought I would get more clucky but the opposite happened. I was so surprised. I think because I did get a good dose of reality of how exhausting it can be and I probably was manifesting fatigue issues back then without realizing. I guess that doesn’t help too much.

I found not ever finding a partner probably harder for me to deal with, but that too has calmed right down.
 
Last edited:

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
Who here would choose to have a CFS patient for a parent versus a well parent?

When I grew up my mom had to work long hours as a restaurant manager to support us. There were literally weeks and months when I didn't see her and so many holidays when she couldn't be home or could only be home for a few hours.

I wouldn't wish illness on anyone but if she had had CFS, I would have been content just to sit on her bed and be near her at least. To me that would have been preferable to a mom who had to be away all the time.

I'm almost too old now to have children but if I got half-way better, I would consider fostering. Having a half-ill parent would be better, I think, than having no parent or an abusive one, like some of those kids have now.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
These past few responses have inspired me to share that my daughter, the later in life child is a teenager. When she got mono I felt horrible! What if a huge piece of ME/CFS is genetic and we don't really know yet? What if I passed this to her? I am constantly paranoid when she gets sick that she will have this awful illness! Just today she showed me a boil on her leg, she walks to and from school. I instantly imagined it to be herpes, and she is a virgin! See how crazy I make myself with this stuff! WOW

Bless us all really!

Now, perhaps selfishly she is the one single person who accepts me and changes my sheets, she is the one who does not mind washing my hair when I am at my worst.. so I am very grateful. She will someday grow up and move on. I have to try to have peace in this moment.

I really do not want her to develop this illness, so I let her sleep when she needs to and I do indulge her probably too much. It is hard.