Other than on here (and on occasion FB) and family I haven’t shared much about my situation with friends / work colleagues. Please note I am a bit of a billy no mates, I love talking to people and happy to listen I just not good at social stuff!
So a work colleague who I thought I got on with on a personal level too text me out of the blue to ask how I was getting on which is very much appreciated.
When i took the step of sharing my situation (no meds working but question of surgery being pursued but unlikely - maybe I over shared) and asked about their family’s wellbeing they only really acknowledged my question about their family. Not a word about my situation other than hope I am taking it easy which I know this sounds very very ungrateful of me. Not sure what I expected really.
I’m truly not hurt but just got me thinking.
My question / discussion point is have people experienced this from friends and colleagues. Or even family?
Is it that they see it’s a difficult situation and they just don’t know what to say? Which then I have sympathy for them?
Do people generally back off when situations are a bit “icky” and difficult?
my own family are not great at emotional support, but they sow every time to give practical help and support and I love them for it. You work with what you got 😉
Hope you’ll see my posting as desire to understand not a whinge, I will still continue to see the good in my colleague I am guessing they just don’t know what to say.
Maybe that’s why this site is so valuable because even though we have different health issues, what is common is the fundamental impact these have on our lives and are more able to be sympathetic and empathetic?
Yeah it sounds to me like they didnt know what to say but atleast they said something would of been worse to ignore it. When I was working and suddenly came down ill I couldn't of imagined how supportive everyone at work would be they were so worried and some of them visited me in hospital. I find that close friends and family are obviously more supportive and understand your situation better because they have been around to experience it with you.
yes it does, I think it was they didn’t know what to say but they said something. 👍
Hello
O I can relate so much
Been agoraphobic for a start makes me Billy No Mates as one by ne friends have drifted as I cannot get out and got on with their life's it hurts but then I think well fair enough
And I always find when someone does get in touch they do the same ask how I am and just say O I am sorry then it goes on to me , me , me and asking me for advice
I sometimes wonder if starting of by asking how I am is a way they can off loading what is happening to them as they know I will ask how they are
Sometimes when someone asks me how I am I tell them and miss out asking about them and you can see their reaction which is they still tell me or they go even quicker than they asked after me
I have now got stronger in the way I think when it happens and just smile and the plus is you soon get to know who really cares and we do
So how are you today ? x
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You have a good perspective and moving on is best to cope with these reactions but it’s come after some hurt - probably a good definition of life itself!
Thank you for asking, I’m ok weirdly, I really do think that diltiazem addled my brain as it’s chalk and cheese re my mental health, so much brighter this week.
But over the last year, I’m learning that waiting is a big part of this game and starting to get better at it. However, I am realistic there will be downtimes - it’s better to acknowledge this.
❤️
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Hello
I have been hurt in life if I wrote my life story people would think it was not real
I am not 100% with my perspective but you sort of have to try and toughen up and somehow you do slowly and you will to
Look at you and the change you have made the waiting is the worst yet you are getting hang of that now and dealing with it so much better which takes some doing so if you can do that then you can see people for what they are and regretfully there are a lot of selfish people in this world
I am glad this week is turning out to be a good one , someone once said to me bank the good days and weeks and save them and remember them when the bad ones' come along
I have every faith in you x
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thank you ❤️ ❤️❤️
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x
good point, the stuff I know now and all big words I’ve learnt (takes me ages to read a medical article / publication looking up the big words 😁). The fact they asked is key! I sound so ungrateful but it’s better to understand than assume things👍
I've experienced the same for the last 5 years , my situation is quite complicated so I found myself just giving a brief overview of it all . I found being treated that way by family particularly my mum has hurt me beyond words ,she often tells me she wasn't like I am when she was my age & maybe I just need to catch myself on/ get over it ! As for friends I don't think they understand what chronic illness actually means & don't get that I won't get back to the person I was before . All this in turn has led to isolation & loneliness, I don't tell anyone anything now . This site at times has been a real lifeline for me ,you aren't alone ❤️
that’s very sad to hear, especially from family and that you have to keep it all to yourself out in the “real world” . Agree Don’t think anyone who hasn’t experienced chronic illness can fully understand but the patience to listen would help. Empathy is really hard to find. But I still hope everyone finds it. ❤️
It is sad but I've got used to it . I think it's true what they say ,you can't teach empathy ! I don't think I understood properly until it happened to me but I had always had empathy towards others in that situation before ,I always listened & tried to help when needed ,it isn't hard xx
Exactly this! The irony ! I think unless they see me rolling on the ground screaming blue murder I can't be in the pain I say I am that also applies to Dr's unfortunately. I've either got a poker face or I cry out of frustration at not being taken seriously a lot . I've often had suggestions that I'm just not trying hard enough or I should positive think my way out of it all lol if only 😅
I like what you wrote. You are right if you are not rolling around in pain then there carnt be anything wrong with you. Same with doctors as well. You are right. No positive thinking helps. I wish I had that magic wand to fix everyone. It is hard.
I think you are right. The hard thing is that people do sort of care or are concerned. But they have their issues big or small. Having since found out about my heart issue. I personally know iam not right or normal so it plays on my mind and it is easier to be alone and remember a time before when I knew nothing of my problem. You need people around you but what do you want from them? See with me the number one topic is me and my problem and the way I feel mentally and physically. Does get a bit boring for others. Iam on medication and iam being looked after medically. So you try the old stiff upper lip. Try to battle through it but it's hard. You keep coming back to same place. The trouble is being an adult, it is you and you alone who has to make the decision, decide what is best for you. You can discuss with others but they have not got what you have and feel what you feel. When my son had his turn in his eye when he was born did he have a choice did he have to make the decision for an operation. We as parents made that decision. Right or wrong? But as an adult I do feel alone. What answers do I want? Who can give me the answer's? Who will bring me the magic wand to make it all go away? It's hard very hard and I do understand where you are coming from.
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It is hard, and I guess will “get used to it” because I get the same what you’ll all said but I’m at the outset. And to look at me I look perfectly fine. Interesting questions what do I actually want from them, I have to and have already found my answers (with a lot of help from people here). Doesn’t stop you wishing for empathy though. ❤️
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Yes people look at me and yes I look fine. Possibly look better since my medication. But looks can be very deceiving. But my issue is rare and complexed. I suppose the way to look at it is to think it has kept me going for 57 years, I suppose it might keep me going for another 20? Who knows. But empathy what is empathy? Yes the professional will look at you and say yes we know what's wrong. This is what we will do. My mind is now scrambled and thinks the worst. And to try to put things in perspective they say well you could get run over by a bus tomorrow, live for the now. That's easy for them to say. They are not in this broken body, it is hard.
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that’s a whole other issue the empathy shown by medical people or not!
Having “invisible” conditions has added issues to battle with. Such a burden of proof on the one in pain to convince others.
My friends would know about my illness(es), they are my friends. I don't automatically raise it with people but if it comes up in conversation, organically, I will mention it but I won't go into details.
I tend to know who is genuine about asking and caring and those who just ask but really are not that interested.
I am fed up of all my medical problems so I expect others are too.
I may mention that I don't like mornings if they suggest an early meeting and will say it's probably my meds but that is about it.
There is more about me than my ailments and I would rather talk about my holidays than anything else. LOL 😜
I can see your point but I admit I am totally focused on myself as my life is on hold but everyone else around me are carrying on with life, I am a stuck record but this is all consuming at present as is fundamentally affecting my health, life and work (and my children). I think people feel uncomfortable as I am probably going to dropout of their social spheres anyway.
I don’t have money for holidays and going out as I need to save for potentially upcoming difficult times, so I’ve nothing coming up to look forward to or chat about. And probably people think talking to me about all the stuff they get up to is insensitive in my situation so even less conversation / interaction.
I can’t not focus on the single issue of my health. So that’s makes me boring company, I get that and so get why people are not keen to engage.
But I’d like to think I’d give them time and space to talk about the issues they have. And I see your point, those that care will be interested.
I have to accept most people will just not want to engage.
I never quite know who to react to the ' You look so well! You would never know you have a heart problem "Living with pain is tough. It's invisible and unseen.
Nobody can see, touch or measure our pain from the outside.
I also don't want to be defined by my illness. I am still me!
Yes you have an illness but you are still you . That's what I have look at. As my problem was congenital then it has made me, me. I might of had limitations growing up but I just assume that was me. Don't like cross country running. But still done alot. The issue of cyanosis which this problem causes may be the reason I carnt do long distance running and could have caused anxiety. Due to low oxygen to the brain. But my body compensated and has adapted. This could have been adapting since being in the womb. But it is the way that you have to except and move forward that's the hard bit. Then you worry what happens if something else comes along, that's when you have to try and put it to the back of your mind. But I have trust the tablet and medical profession. If, as my nurse says it is stable then I want to keep it that way and except my limitations. But as they keep saying you never know what's around the corner,
I think people just don't know what to say half the time. The thought of going through something similar themselves is often an uncomfortable thing to do, so they either end up doing/saying nothing, or something completely inappropriate - including the good old toxic positivity.
I honestly feel like I've reached the limit of empathy with a lot of people, my family in particular. My husband died almost 3 years ago, just as we were going into the first lockdown. He'd had a cancer diagnosis just 5 weeks earlier. He was 48, I was 45, our kids just 4 and 10 years old. My mum, my only family who lives nearby, found it all too much to cope with, so withdrew from our support network. I wasn't working at the time - the youngest hadn't even started full time school - so I had no work colleagues to talk to. It was basically building up a support network from scratch. And now there's this myocardial bridge diagnosis that I'm dealing with, the A&E visits that I've had to call in all the favours for. The hospital appointments that I go to on my own or have to ask others to drive me to... sometimes it feels too much to ask for help with that, never mind unburden all my health woes and worries on them.
My best friend is the only person who knows the full extent of everything but even she thinks that I'm making mountains out of molehills, as she's read online that myocardial bridges are benign, so nothing to worry about. I just need to de-stress more and it'll all be fine! 🤦🏻♀️
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