Really upsets me that some folk think I just need to "get fit" when I am suffering from A fib, does anyone else have this problem?
Family and A Fib: Really upsets me that... - Atrial Fibrillati...
Family and A Fib
34 Replies
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People who don't know what you are going through often don't 'get it': "So when will you be better?", "Is it fixed now?", "You don't look ill" etc. are all common replies and they can be a significant cause of stress. I'm afraid I don't have an answer except to try to explain what is going on (if they're prepared to listen). There will always be ignorant people; you aren't alone by any means!
Have had AF for four years and a lot of people assume it's no longer a problem, after all 'you take medication don't you' or 'just try and relax'
very frustrating !
Yes, it is a problem. It's a bit like having a mental illness - because people can't see any physical signs they think you are 'putting it on' or feigning illness. It's such a complicated illness to explain I tend to make light of it anyway which doesn't help their perception of how I am feeling.
BeancounterVolunteer
Hi Leo
Someone on the forum came up with a T Shirt slogan and I've searched but can't find it, so I will try and remember it, it was along the lines of
"I've got AF, it's a heart condition, you can't see it, touch it or even know what it's like to have it so give me a break because sometimes it makes me REALLY grumpy"
Perhaps we should write one on the forum and then get the T Shorts made?
Be well
Ian
Love the idea of an AFib Tee. I guess the clip you quoted is rather long....I mean I'm not sure I want people stopping and staring at my front!! Will crank my brain into gear.
A fib - Shaky heart, shaken life!
That was me! I have also described it as being like ginger rogers and fred astaire, doing everything that everyone else does but in high heels and backwards!
Good Idea !
"A-Fib a day keeps the doctor away" A bit too provocative I suppose.
"Keep Clear ... I've got A-Fib ... You might catch it" Great when you're in queues 
_
Finvola in reply to
- queueing would never be the same again.
I think that unless someone has seen me in a full-blown AF episode, they will never understand, so I don't bother much with explanations. Someone on here described it as a 'short circuit' which is what I say - if I HAVE to.
That's a great description!
Mamamarilyn in reply to
Love the second one! Great for getting rid of unwanted attention, not that I get any these days lol.
in reply to
That first quote made me chuckle Koll.....C
I think it was me. My 2 boys did electronics for GCSE so it rang bells for them.
I have developed my explanation since reading posts here. I now say:- " i've got an electrical problem with my heart. It short circuits. I have to be treated by a specialist cardiologist who is an electrician." This seems to impress people.
I have posted before about how brassed off I am with medics who diminish AF by calling it "palpitations." A substantial number of people tell me that they have an irregular heart beat. I suppose it's all the same thing, just a question of degree.
It's tempting to try to play it down for the sake of family too, to pretend it's ''just'' a little thing when really it leaves you feeling awful (as everyone here knows). I like the idea of the T-shirt! It would be great to have more understanding from the majority who think 'palpitations' are something Victorian ladies got when you gave them too many flowers to arrange...
Thanks for all your replies. Good to know I am not alone. I like to play the AF down for the sake of the family and it is great to come on here and be amongst others feeling the same as me. Like the idea of a t-shirt too!
Hi Liz,
I can remember asking Mother once what was wrong with the lady next door after the seeing the Dr. arrive with his black leather bag and stethascope dangling around neck...("you shouldn't be asking these questions but if you must know she's suffering from "the malaise") which quickly prompted me to look it up in the encyclopedia Britannica.C
Yep the story of the last ten years and also the reason I wasn't more assertive at the beginning and so got repeatedly mis diagnosed to the point that it is never going to be right now. As i have repeatedly said on this forum I do a fairly physical full time job which is also mentally stressful and I can just about do this if I sleep for 8-10 hours a night and have the occasional day of collapse. But when I go on the numerous training courses associated with this job it always panics me that I am going to 'show myself up' and not being able to walk far enough, up hill etc etc and even stairs. I do not think colleagues would be sympathetic, I think most of them would think I wasn't 'fit enough' to do the job (which I do perfectly well!). I try to plan ahead for such incidents and have learnt to admire views but the best one is to have hurt your foot and have to keep stopping. How ridiculous that I cannot admit it is my heart.
The other irritating thing (I am size 18 and likely to remain so) is that almost everyone thinks that I must eat fatty food all the time and cake! And that's what has caused it all.
Teeshirt yes but then I don't like to admit to it at work. But my partner's attitude who has been there through all the ablations, is pretty rubbish as that now I manage it pretty well, he barely seems to realise I have it and it does worry me that if I am having a particularly bad attack he is not going to be quick enough to get help because usually I am all right.
I think a set of guidelines for relatives that do not play this down (nearly all literature plays this down I find) would help. Even something like if your partner is later out of bed than usual, just check she's all right!
BobD will probably appreciate this analogy. I have an automotive background and have always considered Afib to be akin to what happens when a car has just driven through a flood and then starts coughing and spluttering. This is normally due to water getting on or into the distributor cap (in the days when cars had them of course!) and shorting out the main HT spark from the coil. If you drive steadily you find the car will work ok, but accelerate harder or try to go uphill and it starts to miss again, run unevenly and lack power. The answer is to get inside the distributor cap and get rid of all the damp. Things will then get back to normal, but in the future it will always happen easier as the sparks have been tracking inside the cap creating a weak spot. A temporary cure could be effected by covering any tracking marks with nail varnish (ablation?) but it was never a permanent cure. Of course the car looks perfectly normal from the outside, or even under the bonnet, so it’s only those with knowledge of the cause who really understand why the car is not performing correctly.
in reply to cyrilbarnes
WD 40 should sort us out then!
cyrilbarnes in reply to
Just an analogy, but if we could find the medical equivalent who knows?
My AF is/was (fingers crossed none since ablation 3 months ago) exercise induced. I'm a runner and to me it felt as if someone was squeezing my heart at the start of an episode and as it continued, it felt as if my heart was kind of loose in my chest - that sounds really weird, but that's how I'd describe it to fellow runners. Whether they understood or not, I really couldn't say!
Some while ago I posted this when I was feeling particularly grumpy. Seems appropriate to re post it here!
IF YOU WERE ME, YOU'D KNOW........BUT YOU'RE NOT, SO DON'T THINK YOU DO!
If you want to shut your family up Lee, just tell them it's highly genetic (not saying it is, but they hopefully don't know that ) and it's also linked to being too fit.
_
I have to deal with my husband who doesn't seem to understand when I have an Afib episode. What is aggravating is that he also has Afib but has been symptom free for over 2 years. His episodes were worse than mine are since he needed to go to hospital several times. Mine just throw me out of whack for a few hours.
Also like the idea of a T shirt.
Heather R
What an insightful post Jo. My own experience is similar and I have been amazed particularly at the reaction of my daughter who has never previously shown her supportive side!
Not that problem exactly, but I get really annoyed when people say 'oh yea, my friend/relative etc had that and they are fine, don't have any trouble, able to work full time blah blah. They just don't appreciate that every case is different and there is no 'one size fits all arrythmia'.
Yep, think I'll have several t-shirts with the slogans mentioned on them.
My youngest daughter is brilliant and very attentive when my pulse races. Once when my heart was really bad (ended up being admitted to hospital) I called my eldest daughter and asked if she could come over, she said she couldn't because she had to walk her dog!!! Well that told me not to ask for help there again!
I guess we must also remember that there are a lot of people worse off than us. I did a really long walk a week last Saturday and did something to my knee, it's been agony! Getting down any steps has been a problem, also getting up and sitting down. It's getting better now, but it really brought home to me that a lot of people are permanently disabled by draining pain. I'm going to be more understanding when someone 'dawdles' in front of me now.
I would love a T-shirt. I've been struggling back to fitness after a bad attack last year that totally weakened me. It's so hard to explain how awful it makes you feel. It's not like anything is sore. Yet my hold body would ache. My issue is the loss of fitness doing the sports I love - mountain biking, climbing and hills. It's been a slow road to recovery, but after a year of struggling, I now feel much better when doing sport. Now just waiting on my ablation and coming off amiodarone and bisoprolol. T-shirts would make us visible and for sure, I would wear mine out on the trails, and hopefully inspire others that there can be life after diagnosis
People who don't have this problem cannot comprehend what its like. They take their own hearts for granted. I have learnt how fragile the heart can be and almost everything affects it. Because we don't have a big zip up the front our complaint is invisible to outsiders. We sit/stand there and look normal. Even my boss thinks I've had the op and after a week therefore I am normal
Why stop at T-shirts why not mugs pens pencils rulers !
Re: T shirt how about. A/Fib life is not over, it just feels like it.
A-fib is not a lie - it really exists!
I like that Loo53 because I often get "but you look so well" and they don't understand that your heart is doing a song and dance while they are saying it!
I miss the skiing, scuba diving, hill walking, being able to dance all night, it just makes you feel older than you really are.
Another Jo
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