Hello everyone,
I wanted to offer this and see if anyone experiences similar things/can offer anything useful/supportive?
This was sparked off originally by a comment made by someone who used to be very close. They said: “I’m always here for you”. Whilst there may have been a genuine offer there - they said it following a day when they turned up unannounced at our house, I took the time to give them a coffee but said I was working and had a deadline. Despite this, they proceeded to tell me about THEIR problems. I showed them out. Felt I had no alternative. I just didn’t have the time or the energy.
I felt the “I’m always here for you” was actually patronising rather than supportive. Communicating and support on their terms .In the shape that was convenient to them, but not helpful to us! Said in the end I didn’t in fact know where they were, but didnt’ think it was anywhere near the space I’m/we’re in currently. Since then I’m feeling as if I don’t want anything to do with them.
I feel as a family with one parent with a disability and a small child we manage to do an awful lot. Maybe that is part of the problem. We aim to have normal lives and do the things that everyone else does, but some people expect us to be ‘needy’ and ‘desperate’ (question mark) which we refuse to be!
All in all and I don’t know if some of you out there are sharing this feeling too. If you are, please let me know…I think it is okay for people to exchange as in give and take in support terms on an everyday level. (And there are people I do this with in my life). But there are some people now who seem so far away from the circumstances of my life that they suddenly seem incredibly distanced.
Practical example. It’s difficult to attend evening meetings. Not impossible, but difficult. The baby sitter could maybe be arranged but that doesn’t solve the issue of DH M.S. fatigue. If one of us goes out, the other one has an increased workload in terms of housework/cooking/childcare and less time for Babes. I can do it sometimes but too often and everything seems stretched too far.
And so there are groups I used to belong to/link into which I am not linked to anymore. I don’t think that many people understand about M.S. fatigue. It’s something that you can’t see. I’ve just had a coversation with another friend who asked what support we were getting from M.S. organisations. I had a hard time explaining there is nothing they can do for us right now and anyway, we dont’ want to spend all our time with other people with M.S. no offence meant. Other half is already on the committee of a disability rights organisation and has been for donkey’s years. So it is not as if we don’t volunteer for anything! Apart from anything else, I’m a member of the M.S. society but they hold their meetings in a venue which is a long distance away I’m talking fifteen miles and no public transport.
Another practical example: we’ve arranged to go away for the weekend with a group I belong to. Getting there is fine, but it is a way out and there’s no public transport back on the Sunday. I mentioned this on the form I filled in and said that we would be glad if someone were to offer us a lift back. Time is getting short now, no one has come forward and so I ended up sending another short email today about it. Okay, maybe this has gone under - but I’ve had to get everything else ready and it would be a help not to have to ask twice.
In contrast the event I went to last weekend, no problem as there was a creche. There is an awful lot which we CAN do. Just not always in the same way or at the same times as other people.
All in all, forgive this being a bit of a rant. The general feeling is I’m fed up of some people not seeing us where we are, with our strengths as well as our needs. Not everyone seems to have this problem though.
Something that occurs to me, reading this post, is that people often assume that if you’re at home you’re available and obviously for those of us who work at home, this is not the case, but often very hard to explain. After all, your friend would most likely not have turned up at yur office, if you worked from one, and expected your time right at that moment.
Also, if the way you arrange your family is different from the general ‘norm’, that is often hard to explain too. I have often tried to explain why we have to decline a birthday party invitation as, in combination with the public transport journey to and from it, the whole thing would be too much for my children. Or, in previous times, had to explain that I couldn’t go out for the evening even if my husband was at home as my son wanted me specifically in the evening and I preferred to meet that need. These things are not seen as the usal way of doing things and I have had some very negative reactions to them. That’s just a couple of examples where we’ve found difficulties, and I’m sure others have found similar too.
Yes, it is Julysea. Found it very helpful. “if the way you arrange your family is different from the general norm, that is often difficult to explain too”.
I’m glad to have started making an attempt to formulate these things. This seems to be what is happening. Decided to go to M and S and get a meal deal (packaged and very ungreen and everything…) it is my mum’s birthday tomorrow and her suggestion, so we all won’t have to cook. Would welcome further discussion on this as I think it is something as you seem to be saying Julysea others contend with in different ways. Will check later and/or tomorrow
best and thank you
w.w.
none of my friends or siblings (or my DH’s siblings) have kids, so i have a lot of people who have no idea what i do all day and have even had the pitying look when i’ve told someone i was a SAHM. Hmph. Now if someone wants to come round and i don’t want them too i just tell them, it’s not a good day and i’ll let them know when it is. I do think it’s really easy to drop friends who don’t have the same ideas as you but feel that an effort is needed (on my part) to keep the friendships going. basically just about everyone annoys me at some point or another because they don’t understand where i am in my life right now but for me personally i try and ignore my urge to cut ties as how would they know my situation not being in it themselves, i don’t expect things from them so don’t get too disappointed. it’s good to have friends/ aquaintences i think just to have a natter but i don’t consider most a huge part of my life thats reserved for my DH and kids. Just this week my MIL is coming to visit and wants us all to go out for dinner which is impossible for me as i’m still breastfeeding and my little one is only 6 mths, we had the same discussion when my oldest was little. we just say my DH will go out with her and we can all go out for lunch after the kids have had their nap. Thats it, if they don’t like it tough.When DH does go out he will have a quiet discussion about our reasons etc if they are contested. My advice just do what you can, if people don’t listen to your reasons don’t give any next time, just say thanks for the invite but we have a prior arrangement, saves all the hassle, but don’t lose your friends you may need them one day
I think the main thing is to be as clear as you can about what you want and need from people. If you don’t tell them, they won’t know. Often what feels like insensitivity to you, may come from lack of knowledge on their part. They would like to help, but haven’;t a clue where to start. They don’t want to impose or patronise, but what do you say? We are all wrapped up in our families and the million and one things we do, and it is not easy to really imagine what someone else might need.
For instance I don’t know anyone on real life with MS, so I have no idea what people and families with MS are dealing with. I would have to rely on them to tell me, and them to be ok with being asked questions that might otherwise be prying or rude. So for people a bit farther removed from you I can understand how things quickly go wrong. They say the ‘wrong’ thing - distance creeps into the relationship - they say more ‘wrong’ things and so it spirals.
On the other hand, I can also imagine that you get so bone tired of having to spell everything out to everyone - again. And then they come back with cliche’s… People in general tend to be quite intolerant of people doing things differently in my experience. And they feel free to let you know as well - this is where my tolerance stops Why can’t they agree to disagree? Live and let live.
Anyway, I don’t know if this is any good to you. I hope someone will come forward and offer you a lift for Sunday. Hope you’ll have a good weekend!
Thanks everyone. I have just had a phone call with a lovely person offering us a lift back for Sunday. So this is a relief. Negotiated some of the ‘ask for what you need otherwise people won’t know” thing. So that’s good isn’t it?
All concerned have posted thoughtful thoughts. It is tricky with M.S. as with many other things and Sunshine, you’re right you don’t want to explain to everybody - for one thing, don’t want to harp on about it whilst all the time you’re just trying to get on with things. But sometimes you have to say something.
I think some of the things raised will be ongoing things for many of us? - so will check back again.
best
w.w.
Keep thinking about that “if the way you arrange your family is different from the general norm”...and how many differences there are…generally
best
w.w.
It is all about communication really though isn’t it? How to communicate honestly, identifying your needs and not being offended if people can’t meet them ..... and not worrying about being rude when saying ‘sorry we can’t see you today’ and I guess all of that comes with knowing people better so you have to get over a few honesty hurdles with new friends and with old friends communicating how things have changed once in a family, so almost the harder you try the easier it gets?
Just wanted to say also Angelbaby. When Babes was six months we were exactly the same. It takes priority. And thank the heavens and mothers commitment that it does.
Best
w.w.
I think what Sunshine says it pretty true. I have MS and I think it has scared one or two of my friends, I noticed they were treating me differently, gentler and compounded with home educating and having quite a different way of life, I think it’s made them a bit unsure as to what to say, what to presume. I find myself being economical with the truth, if they ask how I am and I’ve been feeling awful, I very much gloss over it and not go into much detail, because I get tired of being ‘different’ and I kind of feel for them, not having anything really that they can say in response. I tend to joke a lot about it too, which has always been my best way of coping/making others feel comfortable. I have only recently joined the MS Society incidentaly - got my magazine a few days ago. I agree with you totally when you say that you don’t necessarily want to socialise with others with MS, why would you, you have to have more in common than that!!
I think sometimes too (maybe it’s just me, not sure) that because of the MS, I’m pushing the boundaries of difference far enough, without anything else ( home education for example). I feel like I am at the limit to what the people in my life can comprehend and identify with already and anything else pushes me into the ‘weird’ category. I feel I want to reassure people that I’m actually a normal mum and still have a handle on things!
We never go out, I have spent this afternoon, watching DH buying a lovely new suit and feeling like the world’s scruffiest, daggiest woman in comparison as my clothes are all years old, most of them are bloke’s clothes and I just don’t know what to wear anymore as I don’t feel I belong in any category. I’m not your average mum (not with five children between 2 and 12 accompanying me everywhere!), I don’t officially work, but then the bags under my eyes and the plans and notes that I have for the chidren’s education, DH’s admin etc, suggest otherwise!!
It’s funny though, if you could draw up a list of the people in your life, they usually fall into categories, say you might have friends that you’ve acquired through home educating, some via family, some via work etc. You don’t often find that they cross into other categories much and so relationships are secured to certain aspects of your life that sometimes change or don’t exist any more or are challenged by other aspects of your life. Not sure if I’m making myself clear here, but I think the more diverse your life, the harder it is to find people who you get on with who aren’t threatened by your other ‘out of the ordinary’ bits of your life. I definitely try too hard when I meet new people, I don’t want to scare them off with being too ‘different’ so I gloss over the home education, the MS and I try to talk about the other person instead. Only those who really ‘know’ me, know me iykwim.
feeling like the world’s scruffiest, daggiest woman in comparison as my clothes are all years old, most of them are bloke’s clothes and I just don’t know what to wear anymore as I don’t feel I belong in any category.
i can’t let this one go without comment…...
actually you are very beautiful and graceful.
I have one child part-time to run around after. You have 5 full-time (6 if you count the grown up one!). And you still manage to look more radiant than me every Monday!
I feel this has a lot to do with knowing your own boundaries (not limitations, but what you want / do not want in your life). We are often quite good at saying ‘yes’ to others, but not so good at stating our needs, even to ourselves. Communication is important, but knowing ones own boundaries is key, so that you know what to communicate. Good for you w.w. for getting your friend to leave when you were busy. I hate people coming unannounced or with very little warning.
When we are ‘different’ from the norm, in whatever way, it can be quite isolating (being asked if we were weird on purpose, was interesting), especially if we aren’tfeeling particularly confident. A friend of mine from uni (a GP who had had depression) knew that I had post natal depression with dd, and knew that I was really looking forward to seeing her. She twice did not come to visit me and my new baby after saying she would (with no notice, and no reason). I was desperately hurt, but did not feel confident enough at the time to tell her. When she asked me a year later why I did not chat for as long as before (she used to analyse her life for one to two hours to me before I had my first child) I explained that I did not have the time any more. She said she was hurt and then asked why I didn’t make more of an effort, Iexplained that I’d been hurt by her not coming to see me when I’d had PND and she criticised me for not ‘being open enough’ to tell her (erm, hello, depression, lack of confidence, ring any bells, Dr?). We have not spoken since and I’m glad, as I feel that I was at a different place from her and we had a mismatch of what we expected from each other.
Yes, w.w., to say ‘I am always there for you’ can be supportive and positive, but it can also be a way to make you feel guilty and that YOU have to be there for that person, rather than vice versa. It doesn’t sound good to say, I don’t have the time/emotional energy for this person, but sometimes, this is true. Friendships are not equal exchange areas, where we always should get exactly the same level/ amount of support, but there has to be some equality or one person is getting used.
Sorry if this is a ramble, but running on little sleep today.
Tanya
I agree - many of these problems seem to occur because you are in some way different from ‘the norm’.
Sam is 4 yet I still have to be at home in the evenings as he still wakes frequently, usually desperately scared/upset and needs *me* to put him back to sleep. This is obviously just ‘beyond normal’ for the vast majority of people I know who have no acceptance and zero willingness to try to understand. It’s so infuriating.
Maybe some people have this strange idea that when people are at home full time they are literally sitting around drinking tea waiting for visitors, but this is so far from the truth! I personally make plans (even if it’s the weekly shop), carefully pacing things for the children (if friends were to come over, we wouldn’t do anything else that day iykwim) so someone just turning up would throw everything off!
I have also gotten to the point with quite a few friends and some relatives where I don’t feel I can discuss any of our problems as some people seem to think that as we have chosen to: be vegetarian, long term breastfeed, co-sleep, home ed (insert whatever other ‘weird thing’ you can think of! LOL) we have made our bed and need to lie in it and they have become just condescending and downright irritating. I don’t want to have to justify my choices any more than my friend who is worried about her son being bullied at school should have to justify to me why she is still choosing to send him there! I don’t expect or want or need justification - I am happy to listen, sympathise and offer ideas that might help, yet others DON’T when it’s about our ‘non-mainstream’ choices.
I guess it just comes down to the fact that choosing something that is not the norm is almost automatically seen as threatening and undermining to those who have chosen the norm.
I guess it just comes down to the fact that choosing something that is not the norm is almost automatically seen as threatening and undermining to those who have chosen the norm.
I agree with you there. I often get the impression that if you do things different from most people, they then seem to feel as if this implies a criticism of them. At the time my Mum kept moaning about my ‘still’ breastfeeding etc ( and I only did it to about 1 yrs old - she should have seen some of you all here! ) and I felt this was partly because she felt I was criticising her for not having done the same. And I couldn’t have cared less, that was 30 odd years ago, I haven’t got time to worry about that!
The same with my sister who according to her friends ‘still’ hasn’t been away with her partner for a weekend without children after 2+ years - perhaps they feel somehow criticised and need to defend their own decisions. While again my sister doesn’t mind what they do in their families, as long as they don’t comment on her decisions.
Why can’t they agree to disagree? Live and let live.
) and I felt this was partly because she felt I was criticising her for not having done the same. And I couldn’t have cared less, that was 30 odd years ago, I haven’t got time to worry about that!