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Relationships

Dating someone with M.E

41 replies

Doingprettywell · 28/06/2016 16:49

I have met someone with M.E, he is lovely, very kind, clever and my sort of man. We've only known each other a couple of months, we're not in a relationship and we're taking it slowly.
I am a fiercely independent single mum having had several relationships with useless and needy men. Been single for 4 years and not in a rush to start anything. I think at this stage in my life I have become pretty good at sorting out the wheat from the chaff menwise but this one throws me.
He has not worked for about 5 years but has very active hobbies and does a lot of diy.
I feel like I'm being selfish if I reject him for having M.E but I was really hoping this time around to find someone who is capable of looking after me (not that I need looking after) I'm not sure what the reality of living with someone with this condition would be like.
Would this put you off?

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poorpaws · 29/06/2016 23:45

I have had ME for 16 years and have not been able to work in that time. I used to be exceptionally hard working and driven and think I burned my body out with hard work. Its worth mentioning that it's not just a physical illness but mentally draining too. Over all these years I have trained myself to manage my ME and stay positive but it is not easy.

I have to say OP that I couldn't manage any sort of relationship, I haven't got the mental energy and need to spend a lot of time my own. I know quite a few people with ME (through going to ME meetings) and we are all very different and manage our chronic condition in different ways.

I wouldn't give up on this person but take it slowly. Please, please don't give up on him just because he doesn't work though.

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GloriaGaynor · 29/06/2016 23:01

I think you can be a great friend with ME, but not such a good partner. I found it really hard having to let friends down when I wasn't well, and I couldn't cope with doing that to a partner. Always feeling guilty. Them always being slightly responsible for me.

And tbh I really didn't want to kiss anyone when I was ill.

I think it's very very different to be in a ltr and one partner gets ill, to starting from scratch.

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BeYourselfUnlessUCanBeAUnicorn · 29/06/2016 22:52

Definitely agree with not being needy. Generally we hate relying on others and will have developed coping mechanisms which are good for dealing with others. I'm as 'unneedy' as they come. If I have to have help or admit I need it, then it's a very bad day indeed. I'm pretty determined to get on and do it myself, just to prove I can. I imagine it's the same for many disabled people. The idea of being completely reliant of someone fills me with horror.

The best thing to do is have an open discussion with him. It's different for everyone so none of us with it can say how he feels or is because it will be different from us. The fact he has hobbies and does things is good. He is obviously determined to do what he can.

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mumoseven · 29/06/2016 15:50

Somerville Flowers

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PlatoTheGreat · 29/06/2016 14:59

lowfat there is a lot of truth there.
Can only agree with what you said.

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lowfatvegan · 29/06/2016 14:04

I think it depends on what you are looking for in a relationship. If you want to live with someone in the long-run this might be a non-starter, but it might be ok. I think it is fine to decide someone is not for you for whatever reason.

I think you need to start talking to him about your concerns, even though it will be a very difficult conversation for him. It sounds to me like some of your concerns might be misplaced, or based on guessing how he is or might be with certain situations. It would be better to make decisions based on the facts. M.E. is a fluctuating condition though so he won't be able to give you absolute guarantees, but he might be fairly stable for a long-time now so he might have a good idea of how he is likely to be. As it is early days you might also be looking for different things from a relationship (this can happen with any relationship obviously).

I also think that that some of your concerns are hangovers from previous relationships. You are right to be careful if you have been bitten before, but I think you might be jumping the gun a bit by worrying about this person being potentially needy.

Normally when people use that term they mean emotionally needy and possibly not giving enough emotionally. In my experience a lot of people with physical health problems are very resilient and much less emotionally needy/underdeveloped than the average person, especially if they have been sick/disabled for a long time and have adjusted to the disability. This won't be the case with everyone with a physical condition however, so you would need to judge on a case by case basis. Often people with a physical health problem have to become emotionally resilient but also generally have a greater understanding of different lives/perspectives than the average person, and in my opinion are often emotionally healthier out of necessity but possibly also due to having more time to think about things, make adjustments etc. But again this won't always be the case.

Personally I sometimes find people who have had relatively easy/"normal" lives can lack coping skills if things go even slightly wrong, or they sometimes some sound to me like they complain a lot about things that seem minor. I am generalising I know, and I might just have had some unlucky/atypical experiences. I would have a bit of a preference now to have friendships/relationships with people who have had some sort of major difficulty they had to overcome in their life, although this is partly as they might understand me better (I have M.E. myself).

Someone with a disability/illness might have more time to be there for you, if they are not working, and might be able to prioritise you in a way a healthy person might not if they are very busy, or are a workaholic etc. They might also be more appreciative of your positive qualities, in a way that someone else might not notice as much. Disability is not solely going to cause negative problems and it might add to the persons character, in a way that going through any life-changing event might.

I have M.E. myself, and have been sick for a long time and have had a lot of contact with ME patients over the years. Most of them are not emotionally draining at all. I am fairly sick myself but I am friends with people who are much worse, e..g bedbound, and I do not find them draining at all. Actually they are quite hilarious and I feel I get a lot from them. These are definitely two-sided friendships. But sometimes people have though times, like anyone. However the exception to this general rule in MY experience is people who also have some sort of psychiatric problem, who I have often found very draining. However even there is it not always the case. So again case by case basis.

I do think you need to make a decision about what suits you and what your limitations are, but that might be hard to do at this stage as you might not know him that well, or to be honest know yourself enough either (I mean that sometimes people say they couldn't cope with something but then they are in the situation and they do).

So this is a sort of long-winded way of saying, talk to him openly about your concerns so that at least you are basing your decision on facts. You also need to think about what you want out of a relationship in the sort and long-term. Personally I can't see myself ever moving in with someone as I like my independence and would fear becoming financially dependent on someone and potentially ending up homeless if we split up. I see so many relationships ending/"failing" that I think probably most relationships are better viewed as temporary, even if long-term. I would prefer if I met someone to be in a relationship that was committed but that we wouldn't live together. But not everyone thinks like this.

Eek I have just previewed this message and it is looooooooong. Sorry about that everyone.

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JE678 · 29/06/2016 12:21

Whilst I understand why you are unsure, not having dealt with M.E. before it breaks my heart that people can be dismissed for having this horrible condition. I have lived with it for over a decade and have a happy and fulfilling relationship and family life. Yes, it can be hard on both of us at times but could you imagine dismissing a partner because they were blind or in a wheelchair? The best way forward is to see how it effects him and how you feel about those adjustments. We are just people, yes with a condition that varies hugely, but still just people capable of being rubbish or wonderful partners.

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PlatoTheGreat · 29/06/2016 12:16

The thing is, it depends what sort of relationship you want doesn't it?

If the Op is looking for a relationship where he is heavily involved, will do days out with the whole family etc etc and also wants some support at home (i'm assuming HW, childcare, emotional etc etc) then I agree it's not going to work.

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Nan0second · 29/06/2016 12:00

He isn't a layabout but any good single mum has to think about the impact of a relationship on her family. It's not selfish. It's not disablist. It's putting her children first.
I totally understand your reluctance and would probably feel similar. I do think it's different to when a spouse becomes ill as that is something that can't be planned ahead.

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Olddear · 29/06/2016 11:47

As someone has already said, it's one thing if you're in a relationship and your partner becomes ill, but I personally would think twice about starting a relationship in this situation. So, no, I probably wouldn't.

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GloriaGaynor · 29/06/2016 11:34

I've had it and if I'd had enough energy to do 'active hobbies' and DIY (which is actually pretty trying as its physical work) I'd have had enough to energy to work part time.

It may be that he's lost his confidence, or that because of its fluctuations he's found it hard to find work that he can sustain, but he really needs to broach that.

Personally I chose to stay out of relationships completely when I had it.

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PlatoTheGreat · 29/06/2016 11:25

And would I work full time/more if I didn;t have the dcs?
No because in effect DH has taken over nearly all the HW and childcare stuff.
There was a choice to make. me still being evry involved at home or me working.
I chose work because this is what I love and it keeps me sane.

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PlatoTheGreat · 29/06/2016 11:24

Doing I'm sorry but you naive.
What sort of activity do you think someone wiith ME could do to 'replace' work?
Serioulsy, when I have been very bad, I would go to work (very part time) and then would end up staring at the Window the rest of the time. I had NO energy left, no to read, not to listen to music, not go on MN, not to watch TV.
I'm not saying he is as bad as that. But NO energy means just that. No energy regardless of what you want to do.

You do have a point re needing some activities to keep you 'sane' and depression can be part of ME because not being able to do the things you want/need to do is hard.
But the answer to that is a very personal mix of doing other things, still managing some turf you enjoy, prioritising yourself over work/family (as in doing xx that will make you feel better knowing you won't have the energy to help with housework, work or whatever afterwards. Or you will the next day to recover from it)

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BeYourselfUnlessUCanBeAUnicorn · 29/06/2016 11:05

I completely agree with MsMims post at 22.28. I'd be devasted to know someone wouldn't be with me bacuse of my lack of ability to work. I think it says more about them than me. Thank goodness I met DH first. It does get us down you know. People who get ME are usually the exact opposite types to lazy layabouts, we are driven and very active, usually perfectionists too from what I have read and discussed with others. I find it hugely frustrating to be stuck at home. No one is going to employ me now. I've been off for years and have a debilitating illness. It's a shit way of life and to top it off we generally look perfectly fine and get people judging us for it all the time.

OP, no I wouldn't be at work if I didn't have children. I got the illness first and had to give up work way before my first was born. I tried a different path, retrained, went back to college, did a few hours gradually building up and very spread out. It was making me worse again. When my children are older i'd like to see if there is something I can do and just take the payback and pace myself better as I have learnt to do but realistically, who will give me that chance.

heyday there is some decent research going on at the moment and I am hopeful there will be a breakthrough at some point. Some things are pointing to real evidence of the illness and if they find that, they can develop treatments. Plus we may actually be believed as well!

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heyday · 28/06/2016 23:33

My partner and I both have moderate M.E. We both work part time but this means that we struggle financially as our wages are low due to reduced working hours. We both try and keep active but there is very little available energy left after we finish work (even on our few hours). We carry on with our lives the best we can and refuse to give in to this illness but we frequently have to temporarily stop everything and rest for a lengthy period of time. We frequently feel really unwell and even trying to conduct a basic conversation is impossible. One moment we are fine then suddenly it's like walking over the edge of a cliff and we are incapable of doing anything at all. I try to keep as active as possible but many times I find I barely have enough strength to turn myself over in bed at night or climb a flight of stairs to get to the bathroom. We both generally look very well so people can't possibly grasp that we are so unwell.
We have both had M.E for over 20 years and acknowledge that we will probably never recover from it. Although I have M.E, even I struggle with my partner having it too. If I am well I want him to be well but often he isn't and is not strong enough to even put a sentence together. I don't think this man, as nice as he is, is the one for you. You will become very frustrated with his illness. It's difficult to manage and a relapse can come after the mildest exertion.

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Anicechocolatecake · 28/06/2016 23:00

Op everyone I know with M.E is working on something. It's not just you who would find it hard having no structure. People with M.E are regular people, often with huge ambition. Many do charity work, have craft businesses, are involved in M.E activism....the list goes on. I'm sure if this guy could work, he would. Most people want to because of the many advantages work brings.
Please please talk this through with him. Oh and although disability can plunge you into poverty, I have 5 seriously ill friends who own their own homes outright and are reasonably comfortably off. Don't just assume about his finances or the burden he might be to you. Ask him!

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Doingprettywell · 28/06/2016 22:51

I wouldn't mention it MsMims I don't think it's his fault that he doesn't work. I'm sure he would if he could. Thanks for the link.
Do you have something now to replace work and the other active things you used to do? I think I would need something to do to keep me sane.
I dont want him to support me financially and I wouldn't be able to support him either my wages are rubbish!

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Somerville · 28/06/2016 22:49

I don't know where the chaos came from in the penultimate paragraph, BTW. Just situation.

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Dontanalyseit · 28/06/2016 22:48

I have a family member with the condition and they are as far from lazy as you can get but they struggle with the exhaustion to such an extent that they can barely do a thing some days. In some ways I am patient and understanding and although it's not very nice to admit, it is also frustrating.

I couldn't start a relationship with someone with ME if they suffered like my relative. I know there are degrees of it and some people recover well but I still wouldn't. Surely you want someone lovely, kind and clever who is also well enough to commit to a relationship.

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Somerville · 28/06/2016 22:47

I personally didn't mean any offence to anyone who has ME, or any long term medical condition. I didn't read anyone else's posts that way either, though obviously can't speak for them.

Listen, the OP's circumstances are already tough. Lone parent. Full on job. I'm in that place too. Starting a new relationship means giving as much thought to the practicalities as to the feelings involved. At least, it has done for me.

My DH was being treated for cancer for a year before he died. It's a very different illness, of course, but having lived through that once - absolutely willingly for the man I loved - and seen the effect on my kids, I couldn't walk into a new relationship where I thought there was a high likelihood of further caring responsibilities. And from what she explains of this chap - that he's so affected by his ME that even while single with no kids he isn't well enough to work, sounds to me like the hurly burly of family life would be a lot for him, and impact on his health further, and lead to those caring responsibilities.

So I was very much coming from that perspective to the OP. That it's not selfish of her to want to put her kids first.

I did say that if I were single and met someone in this chaos situation it wouldn't put me off. But with children it's different.

Again, no offence intended. I know from how my DH often felt that the fear of being a burden can be awful in long term conditions. But I was in love with him and married to him and I wouldn't for a moment have left him to go through all that on his own. It was awful, but we still loved each other through it and laughed and had fun, and his life had value until the very, very end.

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BennyTheBall · 28/06/2016 22:41

It would put me off - sad, but true.

Your children should come first.

It would be different if you were already in a relationship with him before he became ill.

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whattheseithakasmean · 28/06/2016 22:38

I don't think anyone is suggesting he is a layabout, but on a practical level, the OP has a family to support. Does she have the emotional and financial resilience to take on someone who cannot support themselves financially, possibly to the detriment of her own children? Sorry, it is a no brainer, for me, my kids needs come first.

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AndNowItsSeven · 28/06/2016 22:33

Reading these post I guess I am looking I got married before I became chronically ill. This thread is really upsetting, the guy is ill/ disabled not some layabout.

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MsMims · 28/06/2016 22:32

OP this scale is a good indicator of how severe someone's M.E. is. Would definitely be worth asking this man where he fits in as it is a condition that varies so much.

link

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Doingprettywell · 28/06/2016 22:30

I don't think he's a layabout at all Unicorn it would bother me personally if I didn't work because I like the structure, independence and social interaction it brings. Do you think you would work if you were single and had no DC?

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