does anyone else since becoming sick find it extremely isolating?
I was 20 ish when I first started to become unwell and my tachycardia just got worse and worse as the years went by. I collapsed multiple times, one time I even split my head open after smacking off of a sink which was not a fun experience to say the least and just felt more and more exhausted. Unfortunately I was misdiagnosed with ‘anxiety’ and ‘period related issues’ even though my heart rate was always high whenever it was taken by a paramedic or a doctor (I’m talking like 150-210bpm) and my EKG’s were abnormal so for the first few years I went a long time without receiving any treatment and it led to a mini stroke and me becoming more and more isolated due to not being able to go to work anymore, go out dancing with friends, go on holidays or even meet a genuinely nice guy to date really.
Thankfully I have an amazing cardiologist now who diagnosed me correctly with acute AF and SVT and is going to be doing a third ablation within a year on me and whilst I’m grateful for that I just feel trapped waiting.
My second ablation which I had done two months ago brought my pulse down by 30bpm but it’s still at 170-180bpm when I walk so I’m still not able to do things all the time and as a result I sort of get left out a lot by friends and anyone I have dated doesn’t take it seriously because I look healthy and they can’t understand why I am a lot of the time limited to what I can do and then they are shocked/horrified when something bad happens with me health wise.
I guess it’s because it’s been so long of me just being by myself unable to do x y and z and when you’re in your 20’s if you can’t do all of that then you get forgotten about. I’m finally going back to work again part time because I have had enough of being lonely, my family can only fulfil the need for companionship so much after all.
I think I’m feeling extra lonely because it’s New Year’s Eve tomorrow. Here I am 27 waiting for my third heart operation, single, still living at home and feeling unwell everyday looking at other people and honestly just feeling jealous that they can say ‘hey let’s all go to this place together’ without a care in the world health wise.
I think it’s also the panic of ‘what if this third ablation still doesn’t work and I need a forth one’ that’ll be another year wasted and it could still not work again
Going back to work part time although it will be exhausting and probably will have a further negative effect on my tachycardia will at least I hope make things a bit better for my mental health as I’ll be seeing different people more often even if they are just at work, sounds so sad I know.
I also feel like I can’t even talk to a GP or whoever about feeling lonely and trying to get help because due to my past experiences of being stereotyped as a ‘hysterical young lady’ and ignored for years I don’t really trust a lot of doctors anymore as a result and just panic I will have any further treatment delayed if I said I was feeling depressed :/ I know my cardiologist wouldn’t have this opinion as he’s genuinely a good doctor and isn’t judgemental and is completely empathetic to how all of this has massively impacted my quality of life but my GP on the other hand still disagrees with my cardiologist’s diagnosis and refuses to acknowledge I have even had ablations.
I don’t know, I know I’m rambling. This is the first time I have spoken about all of this to anyone who wasn’t a close family member.
I just wanted to know if anyone else out there has any advice on what to do when your feeling like your in limbo and how to stop feeling like a burden all the time or like you’re just doomed to be lonely.
Sorry this is super depressing I just don’t really know what to do and I’m reaching my limit and thought maybe sharing my thoughts on here might help a bit.
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Sophiieee
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Hi Sophie, I’m not going to even try and pretend I understand what you are going through as my heart problems are not quite as serious or debilitating as yours. But I do know how it feels to be let down by the system and not listened to. I’m currently waiting to find out whether I need a pacemaker and also suffer with a connective tissue disease which causes all sorts of different joint and muscle pains.
Let me start by saying I am 28, married, have a toddler and am currently not working. I definitely understand how it feels to be a burden and stuck in limbo. That is something I am still figuring out how to shake, but it’s not easy is it?! It’s great that you have taken this step into trying to speak about this with people outside of your family. I personally think you should find a new GP, one that isn’t disrespectful or dismissive. He has absolutely no right to disagree with your cardiologist when these are very real things you are having to go through and your feelings are perfectly valid.
I’m not sure what your local mental health service is, but in a lot of areas you are now able to self-refer online for talking therapies. I think it sounds like you’d really benefit from this now you’ve taken the first step and opened up so bravely. So maybe this is something you’d consider?
Sorry this probably isn’t of much help but I didn’t want to scroll past without commenting as I know how overwhelming and isolating it can be to have health problems at such a young age. Sending you love. ❤️
hi Sophiiee. What a very difficult time you are having. Getting the news of heart problems was a huge shock to me (and most others here, I’m sure), but you are doing the best thing, and really trying to deal yourself with your problems of depression and isolation.
As you say, getting back to work and mixing (even part time) and meeting some new people, (maybe even some of your own age?) should help you a lot.
And your Cardiologist sounds really helpful. I hope the next planned ablation works better.
But you seem to have lost all confidence in your regular GP. Are there others you'd prefer to see, in the same practice? If you could, it should be easier for you to discuss possible counselling, local support groups and/or meds.
Hello there. Oh I so recognise your current position. I am now old but had exactly the same scenarios as you when in my teens and the good old “anxiety” card was given as the reason. In those days there wasnt the tests and knowledge now available and I look back in sorrow at the years I got nowhere leaving me feeling isolated.
However things did get better health wise, no idea how or why given I didnt have treatment other than meds for my “anxiety” and when I reduced them things improved anyway. I went on to a successful life. i went bsck to university, gained a good career and married and had a family. I travelled widely and became a national Latin dance champion along with way.
So things can and will improve. Approaching sixty my symptoms resurfaced and I was diagnosed with Afib and SVT and have had struggles again but with sound medical advice and treatment managed to continue ok.
I have a young relative age 19 who is in the same position as you she has been fisgnosed with POTS and severe migraine and her kife is currently on hold but ai keep telling her things can and eilk improve. Dig in there. It might be useful for you to connect with young people having the same issues. There is support out there. Try ringing the British Heart foundation nurses they may point you to on line support. Best wishes. Keep strong. Nothing goes on forever.
Firstly I wish to apologise if what I say doesn't come across the way I mean it to!
In my 20's (and before that) I had a medical condition (not heart related) that left me feeling like you do so I what I say may be something of a help.
From the age of 10 I developed psoriasis and this really did takeover my life, as it lead to be being treated differently at school by some, losing faith with the hospital who were trying to treat me (but who never thought of the mental consequences of their actions) losing my confidence in not being able to do certain things etc. This didn't end after adolescent but into my working life as well (certain colleagues would treat me different, report the 'mess' from my flaky skin etc.)
What it did was takeover my life and yes it really did affect me badly in regards to relationships. I also thought I would end up lonely and it was all my fault! It wasn't all bad as I really did find who were my true friends who accepted me for what I am and was and didn't judge, (and yes my family support remained strong).
When I was about 30, one day I just decided and told my psoriasis that whilst you are part of my makeup you are no longer going to control my life and somehow that changed everything for me.
I have never had children despite being godfather to 5 and good married female friends saying you would have made a great dad, however I have come to accept that is the way things go, lucky I have 2 young nephews who I love to bits!
Moving on when I developed my heart problems there was no long term mental issues as used my previous experience which lead me to consider heart failure as being part of who I am and not controlling me.
Sorry if this rambling and sorry of you get nothing from my story.
Just aside is there a local heart group close to you you could join? Also have you tried Onebeat for 18-30 year olds. This is from BHF website bhf.org.uk/informationsuppo...
I do wish you well and all the best and hope you do find a way forward.
I’m 47 and a dad to a 10 year old. Apparently fit and healthy, just getting on with running our business having fun being normal. Then got diagnosed with AF and coronary artery’s disease and now taking a bunch of medications that make me feel worse. My GP also brushed me off for years which has led to late diagnosis. My cholesterol should of been flagged 7 years ago he told me it was not a worry at 6 total and my palpitations investigated further. So get the feeling of been let down.
I now feel pretty down and relatively awful and I have those same feelings you have, I’m jealous and sad when I see the other dads my age having a few pints and a some chips and looking care free with their kids. I’m struggling to be the happy guy I was a few months ago, I’m sort of mourning my old self. I also will have heart ops this year and sort of feel a cloud of apprehension it’s hard to come out of.
But I have booked to speak with a mental health team and I’m reading about stoic philosophy. I’m pretty determined to get out of this depression and feeling sorry for myself, as it’s of no benefit to me and detrimental for my family. You have to keep telling your mind that you are in control of how you feel.
No doubts it sucks and it’s unfair. But I know if I keep feeding these feelings of fear and depression and anxiety then they’re going to keep growing in power. It might be that you need some medication to help or some therapy’s. I’m telling myself all of this not just you. I’m in a daily battle but I intend to win it regardless of what my heart does.
Humans are resilient and many have survived horrendous struggles in life of every sort. Strength of mind seems to help most.
I’ve also promised myself to step away from my phone and I’ve just failed that. Again I’m trying to head my own advice it’s very hard.
Take positivity from the ones on here that are ten even twenty years into heart conditions who are living well regardless of periodic struggles.
Hello Sophiieee, First of all please never apologise for rambling etc we are all here for each other, talk to us any time you need or want to. I can’t begin to understand what you are going through, you are so young to be experiencing all this but then age is no respecter of health issues. I agree with one of the other hearties who suggested you change your GP. Thank goodness you have a good Cardiologist. I am not sure if there is a rehab team near you, or perhaps you can contact the BHF team for support. I had bypass surgery 15 months ago and some days the anxiety gets the better of me, but we need to keep going and believe that things will improve as others have said who have gone on to do some great things. Please do speak with your local talking therapies team, I appreciate there may be a wait list but it is worth contacting them. Please take care, remember we are all here for you, don’t expect to much of yourself and honour the person you are for dealing with the challenges you have. We all enjoy different things, I wonder if you have any hobbies? I now do adult paint by numbers and diamond art which I love. I hope 2023 brings brighter times for you. Judi x
Oh Sophiieee, I wish I could lean through the screen and give you a hug!!
I know society conditions us to believe (especially women) that we need to have our lives figured out by 30 but the reality for many of us is that it just isn’t as simple as that. I know it’s easier said than done but try not to be governed by what other people think.
I’m only in my 30’s, I’m still winging it. Yes I would’ve liked to have been married before I had my children and in an ideal world I would’ve liked a slightly bigger age gap between my children but that wasn’t my path.
You most definitely aren’t alone with feeling “left behind” but I just wanted to say that you can take back control of the wheel on your terms and when you meet the right person, they will understand about your condition when you choose to tell them and you won’t ever need to doubt their support or love for you.
Well done for reaching out further than your family for support; I really hope you’ve found the responses useful and I hope your new job goes well too! Sounds like exciting times ahead for you, enjoy your new adventure! 😁
your never alone on here trust me. They best thing I did was join this group. I had a heart attack New Year’s Eve feel scared at home without the safety of the hospital but advice on here as helped me some much. Always here if you want to chat
Just been reading your post Sophie aw I'm so sorry for what you have been through can't imagine what your going through. Like others have said your definitely not alone, Im always being told its anxiety or your too stressed and considering my history you would think they would take me seriously ( look at my bio to find out the history of you want). Anyway it's not easy having chronic illness can definitely be isolating some times 💔. Glad you have a great cardiologist who listens and takes you seriously!Hope your ablation goes well and hopefully won't need any more.
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