I am trying to get some support from family. I rang my sister on a Sunday just after lunch to time it so that she may be free. My nephew answered and said they were having lunch so I said I'll call back later. He said 'you'll call us right?'. I did, as promised and got voicemail, so left a message saying if anyone wants to talk, give me a call back. They haven't many hours later.
They won't. They never do. Special days and celebrations pass without contact. No effort is made at all to even respond to my efforts. I find out news by accident often years after.
And I've had enough. I know they aren't supportive, I know they don't care by their choices, their behaviour and their actions. I am the only one making any effort. I know all this and how little impact what I need or want has.
I have given my sister and the whole of my estranged extended family so many opportunites to be in my life, to be in theirs and to repair things. The emotions I am left with are of being hurt, rejected and confused. Other people with families don't seem to comprehend how isolated this leaves me. I can hardly explain.
This is so hard. Harder than my acute or chronic illness. Harder than physical pain, lack of sleep, forms and assessments, endless appointments, fatigue. Harder than keeping my house clean and organised. Harder than washing and sorting clothes. Harder than turning up to a new group and trying to be friendly and make friends. Harder than being unable to work, harder than I know how to handle.
I know I somehow need to move past this, and drum up some internal courage from somewhere but I don't know how and feel so lost and scared.
I woke up feeling so positive today and to face the day but can't forget there's a whole group of people I have connections and ties to, that I love, that don't want to know. I can't stop crying and the realisation that they could do small things to try but choose not to is devastating.
Anyone one of you have any clue how I am to try to face this as it feels an enormous black wave that's drowning me?
x
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I appreciate your words of caution but am not really sure what I'm supposed to be cautious of. I'm trying my best. I know my ability to cope is compromised. So do others but this alters nothing. I fight this and face it full on every hour of every day I'm awake with as much spirit and calm and hope I can muster. There's only so much magicing up anyone can do to counter negative thoughts in a vacuum. I am hurt by thoughtlessness as I think we can all be and it does chip away.
I spoke to a good friend yesterday and it brightened my mood and hers as it was sharing of genuine care, and time spent showing that to another. Someone trying and noticing goes a long way. I allow myself to notice and be affected by those around me and I'm not walled off from them or to their actions. What I ask and hope is for people who profess to care, to actually do this. It can be as simple as that. No excuses! Honesty and bravery go a long way.
I was so depressed for 2 year I couldn't go to my GP, until it got to the point my thoughts scared me. No one close to me realised I was depressed, the easiest role to play is your old yourself.
I insisted on a referral to see a Neuropsychologist, initially I met a Neuropsychiatrist who advised CBT was pointless. He prescribed a antidepressant, something I would normally avoid.
I was lucky first time and I can say it probably saved my wife and daughter lots of grief.
I am so glad you got help and it went well for you. I did much research and did get to see a neuropsychologist and her colleague through a small charity five years ago, and I emphasise that it was only a small charity, who were great and assessed me and made recommendations. Then they lost funding for that role and there is no service any longer. Locally there is nothing and services ignored their professional recommendations. Lots of people know there is a need, and at a national level, but it really is patchy provision. I am on waiting lists and there are no psychologists employed by my local trust, which they admit and they detail their 'efforts' to employ any/enough. That's why the lack of any familial support and their inconsistency adds another layer to my distress.
I, and my consultants and many others have insisted, politely till we're blue in the face. It doesn't change a thing but I will keep looking and keep trying to the best of my abilities!
I am afraid that this is often the way with families now. They are always so busy, so engrossed in their lives that they don't realise how much others need them. I think you could do with some counselling to encourage you to move on from them if they are like this. You could, however, give them one last chance - send them a nice friendly card (maybe an Easter one?) and just tell them how much you'd appreciate knowing how they are.
Thank you for such a kind reply Hidden . I would love to move on but it's weird how thoughts pop up and reminders from music or photos. I've been trying to find some counselling for a while. I had some short term low rate provided by a charity but that's been all I can find locally.
It's jarring as I like to think I'm generous of spirit, but when my reserves are low and I've tried for so long and really tried everything it gets to me. I feel I'm nagging them when I say exactly what you suggest. I'm told cards and letters don't arrive and there's dishonesty which is difficult to interact with. My nieces and nephews have been shown that it's ok not to bother or show interest in me. Perhaps there was sudden electrical outage and even carrier pigeons were evaporated all of a sudden...
Amy, you are not alone. Many people in society (without brain injuries) have problem siblings. In my case, I've two sisters close in age (younger by 7 & 10 years) who've never been there, and I'm afraid I have NO time for now. At best, we tolerate each other. We are very different in attitudes and our behaviours. I don't appreciate their soh, brusqueness or rude language. I have a daughter who lives 11 miles down the road. She leads a busy social life and hardly thinks about a visit. I don't begrudge her, but it would be nice, just once, if she ever thought "I haven't seen Mum in a while, must go see her". It's always me doing the running around after her!
We were raised by parents who were emotionally absent and who abdicated their roles to make their children love and appreciate one another. A lot of manipulation and emotional abuse went on in hindsight....probably considered normal back then. It's just something subconscious we continue with our siblings. A lot depends where you are in the hierarchy too. In large families, there's always one that gets ignored or left out...I am that one! I'm very okay with it!!
I noticed in previous posts you mention hurt and problems with siblings. Do you think it might be useful to have counselling to help you cope and be more independent?
It's comforting to hear as I'm often made to feel that I'm somehow odd to feel this way. I'll be thinking of you on Mother's day if you don't mind. I'm dodging the adverts this year as I used to let mine know how much I loved her and think of things she might like to have or do. I can't switch that part off. My sister said she was glad to hear from me last year after a few funerals and as life is precious she wanted to try again to repair things with me and all of us. She asked me to do counselling with them, then I've heard nothing more. I'm trying to find counselling for me. In the meantime I think oh I'll just give them a ring and get a brick wall back. My small gestures are unwanted. I wish I could forget them but it's hard to do.
Hierarchy is right. I'm glad you're okay with it. My grandmother always made sure I was cared for and not overlooked in the fight to be top dog. This insane competition for attention is anathema to me and I guess I will never understand why there's not enough to go around. There always is. It's a choice. My friend is one of four children and her parents try so hard to show all of them how they are all loved, and when they're all together it's palpable.
Where abouts are you? If you're anywhere near London I can recommend the Tavistock Centre; tavistockrelationships.org/... I remember hearing an excellent talk given by psychotherapist (from there) on psychological effects (grief and loss) from brain injury, and also relationship issues. I was most impressed. They are a charity so costs are based on income and circumstances.
I think anyone who's specialises in transactional analysis or integrated psychotherapy would be good. Why not give them a call anyway (020 7380 1975 to see what they suggest. I wish I could remember the psychotherapists name - if this is important, I can find out for you.
That's so kind of you - I'm really grateful for your reply.
I will give it a try - I've probably contacted everyone in the UK!? I did try the Tavistock Centre about fifteen years back, but then was lucky to find someone locally who was wonderful. She's retired now. I healed to the point I was doing well. But life threw a curveball and I got meningitis and encephalitis five years back and that took the health and career I had built and that had got me through not having such a great start in life with an abusive family. One workplace health service even sent me to a great psychotherapist in Harley Street. Friendships didn't seem to cope with me being so unwell though and that shock to my support network is still rippling.
East Midlands. I used to commute and I still travel quite often to see several consultants in London. Been relying on hospital transport as I got trapped in a train carriage doors at the end of last year not being able to move quick enough! I have to justify the need each time though and get my social worker to ring them to plead my case so any trip now takes a lot of planning and form filling administration. Hoops spring up everywhere now to access things.
I had counselling free through our local Care for the Carers group. I don't know if they are everywhere, but try Carers UK to see if you can find the help you need.
i could have written this myself! Same thing with my family no different, they are not interested. I am a carer for my husband and we need the help badly but like you it never comes. Try to look for other people to bring into your life, easier said than done I know, but that is what I am trying to do x
Thank you. I hope maybe you don't feel as alone with it then perhaps. It's frustrating to direct my hope in the right ways and to the right people. It's a relief to hear how people on both sides of this or in what look like different places can sometimes be feeling exactly the same things. I'm so sorry that you are though - I am looking for good samaritans like faeries wherever I can! And trying to be one. My friend was talking about not being able to speak openly to her husband and it all tumbled out when we spoke yesterday and all I could do was listen and try to send her support through the ether.
I find wonderful people here - I do hope there is a light in the clouds in your life and may a few people around you notice you a bit more (or even a lot more) x
Hi,
I'm not sure that anyone can really know the dynamics within someone else's family so it's difficult to know what will be right for you, but I can tell you that when things were at their worst with my relationships, I felt exactly as you do now, and I didn't think I would get through it.
My neuropysch told me to choose what was most important to me and I chose family.
I became harsh in the allocation of my "up" time, and prioritised all my energy into my family.
(You will understand how little energy you get - this was no small decision)
I could not understand their lack of understanding or empathy so to keep my sanity (literally) I chose to live by the phrase "forgive them, they know not what they do".
I stopped trying to explain it, and just started communicating simple boundaries.
Eg, I can't talk to you whilst the TV is on. (Conflicting noises)
Eg, I'm going to need to go, I'm getting tired. (Fatigue)
I found that when you state things rather than tried to explain, it gets accepted more easily.
They may just start to think you have an uncompromising personality - but I find that easier to live with than managing other people's emotions when trying to explain/argue at a time I'm likely to be hitting the brain fog wall.
It's worth following up again on the therapy. You need to find a way through that works for you.
Gosh. Thank you Hidden . You've made me think. I think I've been hitting the brain fog wall but there's a pattern of them quite enjoying my distress from way before I was ill, or enjoying just ignoring it, so I know I have to deal with my emotions without them. How can you relate to people without any emotion though. Holding a self-preservation distance is healthy but I forget and reach out which is a weird instinct to try to overcome. That I value their opinion is the thing theyknow and take for granted. I'm trying hard to value it less.
There were and are some fairly forceful characters in my family and when younger I always seem to be looking on things unfolding, usually trying to balance it all and guide the overall dynamic in the best way I could without disengaging from them all. I saw people stamping and screaming about their boundaries that often crossed other people's entire selves. Or withdrawing all love and affection. Neither healthy.
Your examples are spot on. Some people are very forgiving of needs or wants, but then always have been and that's nothing to do with brain injury. Some people listen! I try to have short phone calls, and not have to do all the calling. I used to send emails but they're too 'busy' to reply even a few words.
I'm realising by looking at all your responses that I'm not sure I can choose my family. They're entirely absent. How many times do I really need to say 'ignoring me and my needs is rude and selfish and I would like you to stop it'!!! I feel like a very broken record. It's not my role to wake them up or help them see. When I make the effort I expect it to be returned at least a bit and for them to keep to their word to the best they can. If they make effort I respond and think it'd be cruel to leave them hanging, not knowing and wondering.
This forum is wonderful. It seems to me that just by interacting with the previous responders to your question, you have made some valuable progress. "I'm realising by looking at all your responses that I'm not sure I can choose my family. They're entirely absent. How many times do I really need to say 'ignoring me and my needs is rude and selfish and I would like you to stop it'!!! I feel like a very broken record. It's not my role to wake them up or help them see. "
Indeed, you can only control what you feel and do. While their behavior is the trigger, the immediate cause of your pain is your expectation of different behavior from your family. I don't pretend that it is easy to change such expectations, but here are a few approaches that have worked for me:
1. Distance yourself. Trying to just lower your expectations of care from them rarely works. In a case like this, you have to shed ALL expectations. Do this and you will regain control of your emotional well-being.
2. To stop regretting not receiving caring from some people, focus on giving caring to others. Happily, that is fully under your control. In addition, you are clearly really good at it! Per the story you told above, your friend clearly valued your great listening and concern. The world is full of people (and animals) who will blossom as they receive your sympathetic attention.
3. It is easier to give something up when you want something else more. Once you find the people or organizations that you can nurture, it will be so wonderful that you will gladly spend time on them instead of on your unresponsive family. This will make the distancing easier and easier over time.
I am so sorry that you are having to make this major adjustment in your life. It would be great if families were always supportive. I hope that you find a counselor soon. In the meantime, remember that you are wonderful and worthy and capable of making the changes that will lead to you caring and valued interactions.
I'm coming out with some really odd 1950s British boarding school expressions here in a jolly hockey sticks attempt not to get modded but cripes, yikes and yes! It is isn't it? I vividly remember the Headway lady sitting next to my bed in the blur in hospital and saying why don't you go online to our forum...I was awake and talking at hyperspeed at her as my brain started to wake up.
Your great points have me smiling and crying with familiarity and realisation. I'm a bit too careful and frightened rabbit after a few knocks - but if someone doesn't want me around I'm sure they'll say. My friend was genuine and that's quite hard to fake, and she is delightfully unable to lie most of the time.
You've all helped me find my bravery and dust it off again. I know the wanting something more - and to nurture. I used to look after a little girl that I had to leave as I separated from her father. Having to look after her needs above mine was one of the hardest and most rewarding things I've known. After a few difficult months I was dumbfounded when her mother came to pick her up once and we were standing at the door and she refused to get in the car. She ran back and clamped her arms round me and looked up and grinned. All in a look. I nearly fell over. Thanks to you I have remembered this and how good life can be.
I was just the same , my very close family abandoned me at my time of need and it’s now been 2 years . Now I’m back to normal (ish ) and I wake up every day tell myself I’m lucky to be alive and live life to the best I can . We never know what is coming tomorrow so only worry about the here and now and take citilopram it’s my wonder drug xx
Woo, I'm so sorry to hear that. I'm so glad you've been able to. Here's to normalish! It's odd how the before and after bit can be pinned down to one event. Here and now, here and now - my new mantra. I've realised that my memory issues are the bits like this and mantras that I used subconsciously at times of stress go awol.
x
p.s. No sleep means I'm not reading things clearly and I feel like a bad translation or bad cracker joke with two nuns in a car. 'Wind down the window and show him your cross', except I'm not a nun in a car talking about a dark road at night and scaring off the devil! (At that point the other nun winds down the window as instructed and swears and says 'you're very bad good-for-nothing and I'm very cross with you' and shakes her finger menacingly to scare him off. 'No!' says the other nun, 'show him your cross, not you're cross!'). Or something. I think this was similar to a joke from the last scene in one of the Vicar of Dibley BBC series where Dawn French tried to explain a joke to the notoriously slow Alice. I'm feeling like Alice btw.
Give her another call and just say "oh just phoning to see you are all well" then say "got to get a move on glad you are all okay love you xxx Take care and hang up be nonchalant but okay with them. Then wait for them to call you ..sometimes I forget to call my Family and feel guilty. I blame it on my Brain bleed I had. So try and get on with them as they have to lead their lives also as so must you, and don't get the hump when they don't call just be happy to hear from them. Play each day by how you feel xxxx Now cheer up xxxx
Hmmm. I see it's compassions day off? I realise I may sound withering and I've had no sleep again so I hope I don't regret this. I think I realise where my boundaries are!
If I leave yet another voicemail? Nonchalant is getting ridiculous and is fake and for what purpose? So none of them may have a moment of doubt or feel a bit uncomfortable that their actions have consequences. That they can't pretend I don't exist and make sad dramatic claims at how tragic it all is, if only things could be better...if only...if...so my sister can make drunk scenes at funerals about wanting her sibling in her life? Whilst ignoring all my attempts? I realise I may be accused of badgering them so will leave it again. I think it's really hit home how callous they are and it takes quite an effort to be this cruel. Oh if only she called...we won't pick up the phone, or will hide from your calls, but...but but...
I have no idea how to do what you suggest . Let's imagine I could say exactly the same thing, all fake and shiny happy, er this is a follow up to the last follow up for the follow up, er perhaps you moved country, er have all your fingers fallen off, do I say hey I'm leaving a message because I love the sound of my own voice, should I even ask questions, is that too personal or intrusive to mention personal emotions, hi I love filling up the data on your answering service so it gets full, um, or I don't expect a reply I'm just practising for when hell freezes over and you're bored or lonely enough to bother. I won't be able to keep the hurt from my voice and don't see why I should. If I do show I'm hurt or at all angry I'll get pure spite back and that will be passed in seconds to the wider family as an example of how awful I am. It's a lose-lose thing I can acknowledge but I've been gently told this by others for years and probably known it for years but had hoped it wasn't so. I'm not willing to play this game any longer. Life is too short. People here have been so supportive and so lovely and it has given me the courage to value myself a lot more and to not allow myself to be treated like this. Those I love I care for to the best of my ability, I show it and be it. It isn't just empty words.
My sister is the one in full health. I'm fed up excusing her when I don't ask for extra allowances. I have to take her confused messages and try to understand or take the hint despite her professing to anyone who'll listen that she loves me.
How can I try and get on with someone, or a group of people that physically ignored me when I last saw them two pews in front of me at a funeral, looked straight through me, rushed off to the committal leaving me struggling to walk fast enough on crutches to see the hearse and limos drive off without me, with other guests watching in shock and offering to stop the cars as I had travelled for hours to be there and was told I am family so should have been with them. With people who took this opportunity to bitch and criticise me for a rainbow of things to others, don't know me and make no effort to call, visit my home or invite me to theirs, or respond to me and refuse to share their lives with me?
Get the hump? Wow. My feelings are valid. Cheer up??? Again wow. I guess you have made me smile. I think I'll go and flog that dead horse too, seems a productive use of my time.
Sometimes you just have to let go of the whole thing, accept it's them not you. I don't know if that's compassionate, I suspect not.
If I'm going to judge you, all you can expect from a person is that they do the best that can reasonably be expected given the circumstances and in my world view you've done too much.
Easy to say but it took 2 years of psychodynamic counselling for this pearl of wisdom.
As for cheering up, often the best path doesn't lead you to that outcome but allows you to function.
Thanks for your response sealiphone . I weirdly have fed into such groups (as the before and new me). Part of getting older is realising how many of these are set up to cover all sorts of things and there are people working hard but which ones see progress I'm less sure of! At least we can feed back into suggestions for good practice. But without staff or funds to deliver these...
I didn't like to click on a thumbs up that you're angry but wanted to show my support. If you want to say why - I'm all ears. If not, then am sending you a smile and my good wishes to help you get through it the best you can.
My gardener was here today - I was trying to reach and touch the soil and green leaves as it cheers me every time to see things growing but I do it a bit virtually these days! No hauling stuff or building.
My anger is directed at the Government, who make positive noises about mental health and then it's forgotten.
I've got a tale of woe before I sat in front of a Neuropsychiatrist 13 years after developing clinical depression despite trying to access support. The Neuro support teams are buckling under demand.
My Neropsychologist had to pause one session as she was so angry, upset and was also frustrated by my reasonableness, so she'd be happy at my anger now.
Mine too. That's what they're there for, not the individuals necessarily but the whole machine needs our anger and the motivation it can bring to change the things that need changing. Be the change I suppose (trying not to be trite). I read NHS workforce decisions are to be delayed until the Autumn now.
Wishing is for little children, but I do sometimes wish professionals I see would pause too and show me things like that and not toe the party line. It's an indictment on services and our collective structures that you being so reasonable in the face of adversity is the thing that got to her. My consultant at UCLH wrote about me in such a positive and complimentary letter I received soon after our appointment in January I wanted to frame it! Her personality and care for her patient shone through and I think the good ones know how important their words are to us. I have had to explain to people in my professional life that I couldn't do something and the times I have managed to be me, and say or show that I personally don't agree and show a bit of my real self have been the best moments as it takes trust. It takes courage to stand outside the usual to respond like this. When a gastroenterologist asked if I minded that a student doctor sat in for one procedure, I was delighted, as she always speaks to me and all her team with unfailing respect and humour, so to shadow her is the gold standard in being human. More of that please!
I'm doing ok, largely thanks to the kindness on here and the time people have spent to respond to me. I've been getting to know my gardener today - he ran the local municipal service so I think got too senior then was chewed up and they all got spat out in an outsourcing-get-rid-of-everyone-expensive-reorganisation. It's good for me as it means I get all his years of experience and expertise on my little patch and he can reel off the latin names in his quiet way and I learn more. It seems such a waste as anyone could go to our parks and be in beautiful public open spaces that gave us all that sense of a place that values its people.
I agree with what has already been said, it's soul destroying trying to get some company or some understanding or to feel someone actually cares....what I was once told by a professional was... if they are like that to you then always remind yourself of this.... would you stick your hand into a river of crocodiles? Well why would you want to share your personal things with people who don't care, as it's the same....you're just waiting to be bitten and be hurt by it! So now I try to keep as much as I can close to my chest with people who aren't interested. It hurts tho and you do find yourself dealing with things alone. Take care. xx
Thank you peaches2 . I love the way you and others express this and it helps to have a good image to stick in my mind and remind me. My family seem to specialise in being some Roald Dahl type of fluffy bunny rabbits that have hidden zip up suits and are really those crocodiles you wrote of! But, but I'm pink and fluffy and cute they say...it does take me a moment or two to snatch my hand away. Funny how the quagmire of the www has proven to be apparently a lot kinder and more authentic :-). You too xx
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