Friends who can't cope

[katiemama]

Since having our DD we have moved back to my home town in order to be closer to friends. On the whole this has worked out wonderfully, but my oldest friend seems to have distanced herself from us. I'm finding it really hard to cope with, as I've known her for over 18 years and we've always been there for each other. Now she's usually 'busy' when I suggest getting together, and never nips round anymore. I know she was devasted when we got little miss' diagnosis, and some people have found it really hard to talk positively about our daughter but I'm so upset.

Has this happened to anyone else? what did you do?

Binned them (but my close friends were great so easier to do).

IL's were tricky for a while - in the end we forced them to read some books and they are a lot better now.

Does she have children?

I was about to bump this.
No advice for you katiemama, just very sad she feels uncomfortable about a situation that has little impact on her own wellbeing.
Different scenario but I lost friends after a stillbirth - some people really are just there for the good times. Luckily, like JJ, my close friends were great.

katiemama,
my dearest and closest friend is J's godmother....but sadly I hardly see her anymore

She cant deal with her own emotions regarding J's dx of ASD. When J was 18 months old she went on a round the world back packing trip for 2 years....when she returned J wasnt the happy babbling toddler anymore...his ASD had kicked in and she couldnt beleive that a child could change so much. She would cry each time she saw him and ask "where had he gone"....she wanted her little chubby chatterbox godson back.

Her son is 5 in a couple of weeks time and she constantly compares how much more he can do than J....if only she could accept J for the child he is then she wouldnt be so hung up with her emotions.

To save our relationship from ending with any hostility I have limited the ammount of time we see each other over the last year...I cant take her sorrow anymore....my son is perfect to me and I dont need someone pointing out that J cant read yet and hes nearly 10!!
Gradually our relationship has dwindled but we do chat over the phone...but face to face...no thanks...I dont need negative vibes in my life

Ive made some really wonderful new friends through an ASD support group, who are far more undersatnding and supportive and they mean the world to me...I still miss the girlie nights out and the banter I had with my BF....but I have just as much fun with my new friends.

unluckily i 'lost' a few of my friends aswell. Luckily I still managed to keep the best ones!

Oh no. So sorry to hear this KM. Are you absolutely sure it's because of your daughter? You don't have very differently paced lifestyles or anything like that? Would it be worth asking her outright why you don't seem to have seen much of her just in case there's a more understandable reason? Of course she's not going to admit to not being comfortable with your daughter but if there is another reason it'll give her the opportunity to explain and apologise to you. I'm sure you'll be able to tell if she's tries to whitewash you. And if she's really avoiding you because of your little girl's special needs then I guess she's really not the person you thought she was. Finding that out must really hurt though.

I think it's about Katie. Her children are older (primary school age) and she is returning to work, but when I was at work and living locally a couple of years ago we still managed to see each other a few times a week, even if it was just a cup of coffee standing in her kitchen as kids went charging by! Now I'm the stay at home mum! Other friends who we didn't see as much of have been magnificent.Katie has a potentially lethal and disfiguring condition, but she's our beautiful little girl and they see her as that, not as her condition. But it hurts not to have her loved by someone who I look upon as an almost-sister.
I don't get the contact to discuss it with her, I hardly ever see her!

Unfortunately there's nothing like a support group for EB in this country. There's a charity, but unless you throw yourself into it's activities, you don't get to meet other parents. There's no forum, and GOS aren't willing to put us in touch with others because it would apparently be too traumatic. So we are really dependent on our friends, because there's no other social support.

I'm not usually this down! We had a hospital drop in this weekend (mysterious rash and teething ... sigh!) and it would have just helped to be able to talk to her!

onwards and upwards

Katiemama,

Am sorry to read about your problems with this "friend" of yours.

Would ask what country you reside in - is there no way you can contact another EB support group based elsewhere (say the UK for instance?). You need support I feel from other people whose children also have EB.

Please pardon my ignorance but what is GOS?

Katiemama,

Have you come across DEBRA - the following may be of interest as it is their international site:-

www.debra-international.org/member.htm

katie mama - having faced a similar situation when dd1 was born - I worked on the premise that if the friends were supportive and enhanced my life - they stayed, if i was spending time and energy worrying about them and their response to my situation and they were not an enhancement then like jimjams I binned them - figured I had enough stress and worry without them adding to it.

If as a good friend she can't be there when you may need her most then she can't be such a good friend - in my very humble opinion.

Its a shame that she couldn't be more supportive, if she was a true friend she would ask you about the condition and be understanding. Not bring you down with her negative comments. Sometimes a friendship just naturally runs it course as peoples lives go in different directions. At least new friends will be fully aware and accept your DD as she is.

I find this all fascinating but obviously terribly sad. My friends DS has problems (I dont fully understand and she doesnt always want to go into details but its related to lack of oxygen at birth and subsequently underdeveloped motor function???? Please pardon the ignorance).

We're not BFs but even so, ive never felt i had to stand back, always offered to help where i could even though she never took me up on it, and if she clammed up i didnt persist, just carried on discussing normal parenty or day to day issues. We probably see each other more now than we ever did before (except back in the days where we all used to go to the pub Friday and Saturday nights............. those were the days............)

Why do people have such a problem coming to terms with something that isnt, in all honesty, their problem to come to terms with? Not a rant, but i just dont understand it.

Sorry for you katiemama - friends are hard to come by at the best of times.

vikitiredmum- usually because they're embarrased and it makes them feel uncomfortable and they "don;t know what to say". TBH I have no time for it anymore (got enough to get on with without having to deal with people's embarrasment) and as soon as I get that reaction they get knocked off the xmas card list! Wish more people were like you!!

ta JJ! Must be coz im not easily embarassed i guess

To be fair, I often think the people who are different are probably the more sensitive in a way. They have probably spent a long time thinking about it and the best things to say and they are worried about upsetting you and that has made them self-conscious and heavy-handed. These things come easier to some people than others and I try not to hold it against people if they do say the wrong thing unintentionally.

I would be less happy about them actually avoiding me rather than risk saying or doing the wrong thing.

yeah, I can cope with people who occasionally think they've put their foot in iit! because at least that is showing involvement. Ah well.

Debra (UK)is the charity I was talking about. THey are GREAT for medical support, terrible at social support - and seem to have problems with putting parents together. it's odd, because the US and Canadian sister organisations seem very different!

it's such a rare condition, and unfortunately Katie has the rarest variety (of course) Thanks for taking the time to look Meerkats! - that was very thoughtful of you! (GOS = Great Ormond Street Hospital - one of only 3 places in the UK where this condition is treated!)

I just wanted to give everyone who replied to this a virtual hug you've reassured me that I'm not alone to think this behaviour is out of order, and I'm reassured that people like vikistiredmum are out there
xx

Hi, wanted to chime in here. My best mate keeps asking "are you sure" he is asd, are you absolutely "sure?" I dont know what she means by that. I keep on telling her yes i am sure. I feel that when it sinks in, she is not going to be able to deal with it. She never really shows any interest and drones on about how wonderful kids are and takes no notice of how my life has changed inexorably. Time for new friends methinks. Some people just cant handle it.

Aww bless ya katiemama! There are plenty normal people around without hang ups i assure you!

katiemama, not the same thing at all but when ds1 was born I had severe PND and people I had thought of as friends were sadly lacking. I don't think I fitted in with their preconceieved ideas of new motherhood (well, gibbering suicidal wreck sobbing in a corner isn't everyone's idea of the joy of being a new Mum ) It hurt at the time but it did make me realise who my real friends were - friends I still have now. I've also made new friends - friends who've known me post motherhood and like me warts and all.

Maybe not really relevent - but some people just can't cope with anything outside the 'norm'. Their loss I reckon - she's missing out on getting to know your special little girl.

Marthamoo, can i be really impertinent and ask you - doesnt PND make you that much more sensitive to situations etc and perhaps make you think you are all alone and abandoned even if perhaps you are not because that is the nature of depression?

Not impertinent at all, vickitiredmum - yes I think that's true. Everything is 'warped' when you have PND and it's hard to be objective about any situation. Though at the time I really did think I was the only person who had ever felt quite like I did - no-one ever admits to having a baby, feeling it was the worst mistake you ever made, and wanting to be dead Now I know it was the PND that made me feel like that but at the time I did feel extremely isolated.

Some of my friends were still pants though

Sorry for thread hijack, katiemama!

Yes - sorry! Cant help asking questions me!