Diagnosed with MS and thinking about having kids?

Caring for someone with MS
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My advice is don’t.

I’m 35 and my Dad was diagnosed with MS when HE was 14, it didn’t get to the point where he had to give up work until I was about 8 years old.

Honestly it really has been a true nightmare my entire life, I’ve had social anxiety since i was a child, depression on and off for 20 years, mostly on now.

Having to live through and watch someone you love experience plummeting health, and watch them lose everything they had to the point of them only being able to get out of bed and sit in the chair next to it and watch TV all day, then go back to bed is devastating.

It has effected me in so many ways, i haven’t lived a normal life, i never stood a chance having to deal with such a heavy burden, i always felt like an outsider, never really fit in with everyone else, it has massively effected my personally, emotionally and psychologically.

I really can’t get my head around the idea that having been diagnosed with a serious progressive disease, someone would choose to have children, don’t do it, it has inflicted a lifetime of misery on me.

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Hi, I see you havent had any replies and wonder why?

I wonder if it is because your views on how your dad`s MS impacted so heavily on your life, ar so defined.

I am sorry to read just how badly you feel. Over the years Ive been a member here, Ive read threads asking for advice on whether or not have a family.

I reckon in all of those posts, the answers were yes…go ahead.

So maybe some people find it difficult to reply to you, or just dont know how to word a reply.

I have a condition, similar to PPMS, but it carries a 50% chance of being passed down to my children. Of course I feel terrible about this, but seeing as I didnt start with problems until I was 45, there was nothing i could do about it. Both my daughters already had their children, before I became ill, therefore they could do nothing about it either. No-one has suffered unduly due to my disability…except me!

Likewise, some folk may not know they had MS before starting their families.

I dont think MS usually impacts quite as heavily on families, as it has your`s.Perhaps if more support and understanding had been available to you, things might not have been so devastating.

luv Pollx

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I don’t think what I am about to write will be a great help, but here goes…

I am 62 and I have a son of 37 and a daughter of 34. I was finally diagnosed with PPMS in 2014 but suffered my first sign in 1990 when I suffered a very bad bout of optic neuritis. My children, of course, had been born for some time by then.

Also in 2014 my son was diagnosed with RRMS when his children were 9 and 7 years old.

This is not a sob story just a statement of fact. The chances of genetic transfer are very low but it can happen. It happened in my case but who knows what will be the story for my grandchildren. My daughter also has a son.

Life does deal heavy blows but we have no choice but to live with what we have. Being older I believe I have taken it fairly well although I do despair when I project to 10 years hence, and then I vow not to do it again and live for the moment. My son, being a lot younger, does have his moments of anger but is generally ok and we try to support each other as best we can. He is bright, rational and has read much about MS so he knows the score over genetic inheritance.

You have seen your father deteriorate over a long period of time, and that has been heartbreaking for you. I do not know what your relationship is like with your father and whether you were able to talk about these things in the past. Fathers feel guilty too about what they have inflicted on their offspring, and it needs to be articulated for everyone’s sake.

Are you able to talk to your father and can he communicate with you? Your post does not state whether you are receiving any help yourself or whether your father is being visited by anyone outside the family to help?

I am lucky to be in a loving family and we are able talk to each other about emotional issues. I do not find these things so easy and, perhaps, it is the same for your father.

That is all I can add to the sensitive reply already posted by Boudica.

Best wishes

Alun

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Dear Het

I don’t think my feelings on this subject are particularly typical, but here goes anyway.

I have never felt that I particularly wanted to have children, which is really why I’m a bit atypical, in fact when I was 22 and had an overactive thyroid, a treatment was possible that could make me infertile. I wanted that treatment and said ‘I’m never having children anyway so why not’. The doctors thought I’d change my mind so gave me different surgical treatment. I never changed my mind and I never had children. I’m now aged 48, MS was diagnosed when I was 35. Although I’d had my first relapse and tests for MS at the age of 30.

There is a tiny bit of me that wishes I’d had kids but in general, I’ve not regretted my choices. If at any point I’d become pregnant, I would have had to think long & hard about abortion, and that is the case even after I was diagnosed. However, if it had happened after diagnosis, I am 100% convinced I’d have had an abortion.

You see, I didn’t want to bring a child up to be the child of a disabled person. I know that many people do have children after diagnosis and I would never inflict my views onto them, and I never reply to threads where it’s clear someone is aiming to have a baby after diagnosis. I know that many women (in particular) feel unfulfilled without having had children. And this is their reason for making the choices they do. It is a very personal decision and rather contentious.

I truly sympathise with your feelings. They echo what I have always believed for myself. The views of people like Poll and Alun are more typical. They of course both had their children, and in fact grandchildren by the time of their diagnosis so had no choice in the matter. Aluns’ situation in fact is even sadder because of his son. They do not of course fit in to the views of anyone who has had children after diagnosis. I hope you get answers from people who have made this choice and can explain why they made the choices they did.

You don’t say whether you have had children yourself. If you have, then maybe you can understand what drives people to have children despite their physical and mental health problems. If you have deliberately chosen not to have children, this would reinforce your own feeling about your fathers’ choice. And of course you are still young enough to decide to have a child if this is something you feel is possible for you. A child born of a person who has MS is not necessarily, or even likely, to have MS themselves. Of course it is slightly more likely, but there are so many other factors that come into play.

I hope you receive other views regarding this issue and I hope that they can bring you understanding about your parents choices.

Sue

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Het you have had some very good responses to your thread and I wish I was eloquent enough to reply satisfactorily. One thing I would like to add is please seek help for your feelings about all this, it has obviously affected you a great deal and you need to be shown coping mechanisms. I understand from previous threads of families affected by MS that they get support from social services perhaps you didn’t/don’t get this support, perhaps non of you get the support you needed and indeed still need. If there are no social workers involved please go to you GP tell him how much all this is affecting you. I think you need to speak to someone whether that is a counsellor or someone else who can help I don’t know but your GP should be able to guide you.

Best wishes.

Jan x

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It does sound as though your young life keeps getting snagged on the thorns of your father’s MS. People have all sorts of troubles, coming to terms with childhood difficulties that are hobbling their efforts to make their way as fulfilled adults in the world. When a person is well and truly stuck in this way and cannot see a path through the mire, some professional counselling help can make a real difference. I am sorry if that suggestion sounds facile or disrespectful of your pain: please believe me when I say that I would not suggest it if I did not know from personal experience what a blessing it can be to be helped towards a fresh perspective on old troubles.

Alison

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I feel remarkably similar to you, Sue.

I suppose I never felt particularly maternal. As a child, I sort of assumed I’d grow up, marry, and have kids of my own one day - because that’s what “most people” do - but it was never a burning ambition, and I can’t ever say I’ve felt “broody”.

Perhaps it’s all down to not having found the right chap. There was someone once that I thought: “Yep, I wouldn’t mind having your kids”, but even then, it was only “not mind”, not: “I really, really want”. We never got our act together, and he went on to get himself killed at a relatively young age, so sometimes I think everything happens for a reason (not the getting killed - but that we didn’t make it) - I’d have been widowed/single parent. I’m the least practical/domestic person you could possibly imagine, and not very patient either, so the worst person in the world to bring up kids alone. And then for someone who was not a “natural” in the first place, to go on to be diagnosed with MS…

Well, I can’t even begin to imagine how I’d be struggling now, and the effect it would have had on those (hypothetical) kids - even though I’m supposedly “mildly” affected (haha).

I just don’t think I’d have been able to cope. I just about cope with looking after me. I fear they’d have ended up in care or something.

So I dunno. Occasionally I’m asked (though it’s wearing off a bit at my age), do I regret not having kids? And again, I wonder if everything happens for a reason. How long (years) have I been ill? At some level, did I recognise I was ill, and that put a damper on any urge for commitment and family? I know I began to have nightmares about being “seriously ill” long before I was even investigated for anything, so I think my subconscious was aware of something, but you can’t very well go to the doctor and ask them to investigate dreams/premonitions you’ve been having, can you?

Hmmm. No real answers here - philosophical musing. I think it probably worked out for the best, though I can’t have known what I know now - that the person I could have accepted as the father of my children had a limited future, and that I myself would be ill.

Tina

x

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There is one point I meant to add to this, Het66 - do guard against the mistake of assuming that, if your father had not had MS, your life would have been a bowl of cherries. Those of us who do have MS ourselves need to guard against that one too, and it is a surprisingly easy error to fall into.

Alison

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Perhaps we could leave this subject now.

Het has had several replies of varying thoughts.

Thanks to everyone who responded to my request.

Pollx

Het…hope you can find your way to a better place hun x

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I didn’t know he was diagnosed after I was born until about 10 years ago, i always just assumed he was diagnosed after I was born, it never occurred to me for a second that that wouldn’t be the case, and then at some point we were in an appointment for something somewhere and he was asked when he was diagnosed and he said when he was 14, and I said that can’t be right, but he was adamant and said it again, my dad has memory problems and a degree of cognitive impairment and whenever he’d been asked that question before he’d always given a different / vague answer because he couldn’t remember, years ago… 20 years ago, 25 years ago, but it seems he had a moment of clarity at the point and remembered when he was really diagnosed, it bugged me for ages but i kind of dismissed it as wrong, then a few years later I asked his sister who we don’t see very often because she lives far away, but she confirmed that he had an ‘episode’ when he was 14, lost the use of his leg or something and it was confirmed a few months later, then much later on when in a doctors appointment I asked the Dr, and he showed me, diagnosed 1967, 13 years before i was born.

It still pisses me off now.

Yeah he gets carers 4 times a day, seen by district nurse has careline etc… but i do everything else, deal with finances, drs, pharmacy, medication, shopping etc, it all mounts up, plus the worry and emotional stress and the fact it’s effected my life, had to give up work etc…

There is no talking on any deeper level, how it is effecting people in family etc, i’ve wanted to say to my dad why did you have kids when you have been diagnosed with such a devastating disease but i’m not sure what purpose that would serve, i’d like to express my volcanic rage about it to him, but that wouldn’t help him, i think it would help me though.

He’s also very stubborn in his dealing with his illness and we have had to fight and push every single piece of external care and help he has onto him, because he would refuse point blank if i wasn’t there to accept it, which in itself is stressful, it’s always a battle, so that has put more pressure on me because i have had to be there for every single assessment / OT appointment he’s had over the years. One time he had an assessment and i wasn’t there for some reason and he refused everything, I had to rearrange it and he ended up getting about 3 pieces of equipment he needed, similarly he was in hospital once, and we were told he’d be give a physio appointment, come a week after he was home and nobody had contacted us I rang them up and sure enough, before leaving hospital he had declined it.

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Thanks for the reply, no I’ve never had kids, i do like kids, i have friends with kids and a little part of me did want them but, i dunno the experiences I’ve had shape how i view the world, and I’ve had to cope with such shit from the get go and it has consciously and subconsciously influenced my decision to not have kids, ‘the world is a shitty place so i’m not bringing kids into it’

If things had have been different and life would have been easier would i have wanted kids? yeah, so that’s another way my Dads MS has effected me, but that’s not a major issue in my life so that doesn’t bother me a great deal, or maybe it does I don’t know!! His illness has effected my in such deep ways i would need psychoanalysis to suss it all out!

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Thanks for the reply Jan, i will look in to it.

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Hi, thanks for the reply, you are correct in saying that it wouldn’t necessarily have been a bowl of cherries, but even from the point of view of my Dads life, it has been hard to watch. He was a very highly skilled sheet metal engineer, and a very good one, he loved his job, he was also a skilled self taught mechanic, passionate about old cars, buying one after the other and doing them up, he was also a keen gardener, growing all manner of vegetables, he loved nature and camping and long walks in the country, My mum was very intelligent too, and was creative and had organisational skills, so together what they had was a lot of opportunities, She passed away in 2003 and I’ve slowly had to watch everything that my dad was ever passionate about be stripped from him until 30 years later his life consists of struggling to get out of bed into the chair next to him, watching tv all day then struggling to get back into the bed next to him, interspersed with struggling to get on the commode infront of him and periodically falling off the commode and messing everywhere and having to be cleaned up by me or his carers. So it’s kind of hard to not think, ‘you know what? his life and my life might have been a bit better if he didn’t have ms’

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Thanks for your reply, the theme in my family, and with my Dad has been denial, everyone wants to pretend it’s not happening and want to get away from it, and ignore it hoping it goes away, isn’t real or not as bad as they say it could be, except it doesn’t go away but gets worse and worse to the point where it becomes a living nightmare. I knew this thread could potentially be controversial, but I also thought that my experience is my experience and I have a right to express that, of all places on the MS forum.

Denial of what is, and what will be is the only way you will have kids with MS, in my opinion. My Dad thought he was fine when he was 28 when he had me, he was considerably less fine at 38, and elseware on this thread i describe what he’s like at 63. This is my opinion, based solely on my experience, everyones experience is different, that’s fine.

I’ve read countless posts elsewhere of children and family members struggling to cope with parents and relatives with MS, and people with MS struggling to cope, So to the post from anonymous below about 1000’s of kids having postive experiences with MS i find confusing.

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All i will say it that if you can accept that life will change and sometimes become really tough. There are rewards from having kids. I am happy to talk about it further and won’t labour the point. But the advice i was gives was don;t let MS stop u doing something you want.

I’ve los a lot over the care for a wife and children. I am still glad, but it took a lot out of me and is a lonely place at times.

Follow your heart after some medical advice.

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