A bit upset

I don't go on about having AF in fact most of the time I don't tell when I am having a bout (only to you on this site) but was at lunch with friends I hadn't seen for awhile they asked me to explain about AF LQTS and CHF as I have all three ,I was in the middle of tell ing them when another "friend"joined us she listened for a while then said stop feeling sorry for yourself Jean has just found out she has cancer and has to have it removed . I tried to ignor the remark and have a nice lunch but it played on my mind is this how we are perceived because you can't see AF or have it cut out is it not a problem,I must add I am very sad for Jean but her prognosis is good

47 Replies

  • Hi Mazza23, I'm so sorry to hear about your experience with your friends and about your friend I wish you both the best. I don't think people understand AF at all, I know my friends and most of my family think it's no big deal and that it's nothing, I wish, but unfortunately for all of us who suffer with it it is a big deal and it's life changing for a lot of people, this is a heart problem so it is serious and to all of us who deal with the symptoms and the Afib episodes it is rough and nobody gets that and to me it is so sad because having support and understanding would he nice. I understand how you feel and I hope you know that you are not feeling sorry for yourself but that you are dealing with a real medical issue and don't let peoples opinions make you feel bad. Keep your head up and keep smiling and don't worry we are all here for you.

  • You are spot on. People describe it to me as a racing heart but mine is not this it is just irregular and although I don`t feel it often I know when it is bad as all the breath and energy is sucked out of me and I find it difficult to get out of my chair. My son struggles to understand but at least he now accepts it and helps me when I can`t do things. I am his carer as he lives with me and is autistic.

  • I can totally understand why you felt upset at this and your friend was very wrong and insensitive to say what she did. In some ways you could argue that heart problems like ours are actually worse because we can't all be fixed and we are therefore left managing the problem and living alongside uncertainty and in mant cases, fear, for the rest of our lives. I have been off work for nine months and was essentially housebound and in fact bedbound for much of that time. I was so breathless I couldn't eat, lost over a stone and a half in weight and I couldn't speak to anyone during that time as I would go in and out of heart block, svt etc, felt sick and honestly many times I would say to myself "come on, it's not like I have end stage cancer" but actually I felt like I was dying all the time and I even wished I was dead as I was barely existing and being in and out of the various arrhythmias like I was, was so indescribably awful that I felt there was no point in living anymore. So in fact, at that point, I started to think that at least if I had cancer and was having say, chemotherapy, I would perhaps have some respite in between. I would at least be able to speak to my children and family and friends and maybe even read a book or something when I was doing nothing but staring at the wall, wishing I were somewhere else and someone else.

    So yes, you may not be able to see heart problems, but the heart is the very core of us and to suddenly have to be aware of every single beat is tiring and frightening. Nobody can possibly understand if they've never had problems but you know I bet if you asked them if they've ever had a single ectopic beat, I bet they remember having it and then if you say to them, it's like having one of those, only all the time with irregular beats thrown in, breathlessness because you don't have the same exercise tolerance as before and not to mention the various medication and side effects that we have. As for heart failure, this is a progressive illness so again your friend was ignorant and wrong to belittle you and trivialise what you have.

    Anyway, what I'm trying to say is that you are right to be upset and your friend was wrong to speak to you like that. It's just that even the very word cancer carries an emotive element to it that chronic illnesses cannot compete with even though many carry their own life sentence with them. However, sounds like she's not a very good friend if you ask me. If you get the chance to speak to her alone then maybe you should tell her how what you have affects you and how just because you can't see it, doesn't mean you aren't struggling. Alternatively, ignore her and accept that there are always going to be opinionated people out there who will never come to understand what it's like to have heart problems but there are plenty of us who do and so you'll never be alone.

    Take care and best wishes,


  • I wish I could do what you say but I will always try to remember what you said when on a down day

    I have a/f for a good many years now kidney transplant for 25years (brilliant) hip knee replacements disc removed from spine etc

    Have never complained or asked for help from children as always had my husband but sadly list him last year so now in own

    I'm in a position now where back problems have got worse which is making it more painfull then before but still have tried to plod on

    What I am worried about now is that I don't like to tell son to much of what is going on because his mother in law as been diagnosed with cancer so I don't want that side of the family thinking I shouldn't be saying anything to him

    What you get then us nobody tells me anything

    I don't know what to do for best most of the time I can plod along on alone go bedroom have a toot then carry on again another time you feel you would like to talk about problems but then feel like a hypocondriac

    Sorry to go on and thanks for what you wrote when on a downer will try to remember what you said

    Take care June

  • Rusty8 , June - it is very tough coping on your own. I agree that judging how much info to give family is difficult as one doesn't want to be a bore but equally I have had" I didn't know you'd had a hospital appt".

    I would be inclined to write to your son at some point. That way you can practice what info you will eventually send. Don't send immediately even when you are happy with it ,leave in a drawer for a week or so and re read it.

    Maybe start with " When I chat to you I find it hard to explain my illness.... " or " hearing about your mother-in-law's cancer has made me think that I maybe haven't explained my illnesses very well" or some such. Incidentally I'm not sure what the other side of the family think of your disclosure should concern you.

  • Please feel free to share your problems here. We all need someone to go to when things get tough. We know you're not a hypochondriac, so don't let that stop you!

  • @Rachel 191272 I also experienced the feeling that I was going to die, when I started to get afib during the middle of a shopping trip with my husband. This was also a low level of partial heart block--basically My heart stopped-=-of course it continued very soon as I am sitting here typing this to you. However I grabbed my husbands arm and said " I am going to pass out right now!!"" It felt like I was dead but still standing aND THE brain was slowly fading out. This also happened after teaching my first 3 morning classes. walking down the hallway I had to lean against the wall and wait for my heart to restart. really creepy!!! I retired 4 years earlier than planned and began researching the symptoms and seeing various cardiologist until I was finally corrrectly diagnosed and then located the best electrophysiologist I could find and referred myself to him by faxing cop[ies of all my abnormal ekg's and holter monitor tests and the last cardiologist's diagnosis of paroxysmal afib. all is very well now This is undeniably terrifying.

    Have you had an ablation, been put on low level sotalol, and warfarin? do you monitor your magnesium and all electrolyte, trace mineral, co q 10, taurine etc intake? (anyone taking supplemental magnesium- cannot take within 3 hours of sotaqlol)

  • Well although i wish Jean well.

    Uou have aifd too

    Theh cannot see a plaster or a cut.

    So it doesnt matter!

    Well you do.

    Im sorry you were put through that.

    Thankfully on here

    We support each other.

    Chin up.

  • It seems there is a spectrum with cancer at one end and mental health at the other in terms of public sympathy research and financing.

    However management of both cancer and af has improved dramatically in the past 10 years, with lessening mortality, but mental health problems seem to be worsening as suicide rates increase.

    We are fortunate to be the beneficiaries of modern af management.

  • Thank you all for your replies ,I consider my self lucky to live in an age and country that the advances I'm medicine have given me the best out come possible and although it scares me sometimes I know help is not far away it is good to be able to talk to those that understand Marie xxxx

  • Hi Mazza.

    I think that Happymum's response is brilliant and hits loads of nails on the head. Unfortunately because they can't use one of their five senses on AF creates an issue. Everything is at least a secondary use. Yes people can feel it being irregular is seeing it on a screen but they just perceive it as well my heart rate goes up and down depending on whether we are sitting, walking, running, etc.

    I also think many of us do try and make the most of things and have learnt how to do workarounds and make the most of things and not moan when we feel really lousy.

    AF in so many ways is just like electricity. I was originally an electrical power engineer. Many good engineers just could not understand electrical aspects. I used to make comparisons with mechanical and water systems to try and explain things.

    Drawing a parallel (and ignoring the fact that many electronic products are no longer affected) but if the electrical supply went up and down like our hearts and the picture on the TV was normal and then went all over the place or their vacuum cleaner was normal and then started running at double speed then half speed they would be jumping up and down and creating a fuss so quickly it would be unbelievable!!!

    I have heard and received the cancer quote / comparison many times. It is great that so many people understand cancer and can picture internal cancers because of all the photos and diagrams and all the publicity about cancers. Unfortunately they then think other things are insignificant or are just in the mind of us sufferers.

  • When I started typing my response on my phone there was only Happymum's there!!!

    PS you have every right to be upset.

  • @PeterWh Your response is so true. At one point afew years ago I had a 5 1/2 hour knee surgery. All worked out excellently, but there were 2 procedures on 1 knee done one after the other during the same surgical time. One was to realign the patella, aas it was trakcing in the wrong compartment and the other was a partial resurfacing of the articular cartiledges with a custom made replacement.Very high tech-- very excellent job. When I mentioned to my son that I was going to have this surgery he replied "Oh well, that's nothing it's just a mechanical issue" someone he knew had a pre cancerous colon tumor removed and is perfectly fine so he felt this was a problem and mine was not. I did not tell him about it so he would feel sorry for me as I did not feel bad about it, I was actually very happy that it could be fixed so I could continue my physical activities and notbe in pain. I was just surprised that he thought it was no big deal. they also used an outpatient method and sent me home hooked up to a nerve block med for 6 days ( in the femor nerve) Sounds gross but works well no pain. The thing is that under general anaesthesia a person could die. though they usually do not. and any surgery is a risk. and of course 10 months of physical therapy is gross but works well. I just thought his response was showing that he did not have a clue. Also when He knew I had afib and was going for the ablation he was concerned and wanted to be notified immediatley after the surgery that I was okay--but when at his house before the ablation I suddenly said " oh no my hear is beating at 150 beats a minute and I sat down on the couch to rest, no one there could really understand how this felt, and I can see why they would not, but it is still distressing, esp;ecially since no one can really do anything about it. Also, one of the teachers at a tai chi class I took knew I had had an ablation abnd she said to me "well you look fine, as you are doing this clas, so everything is okay" She had no idea thqat I was doing the classs (befoire ablation), while experienceing, heart stopping and starting, and pulse rates going from 68 to 170. Just because you look good on the outside does not mean everything is okay on the inside I had also told her there was a genetic tendency component and she said "Oh if it is congenital now it is surgically corrected so you can live a normal life" I thought this was really sort of funny, but didn't persue the topic. she is a retired very excellent psychoterapist, not a n electrophysiologist or a person with afib-- so why bother explaining. But it is clear that others around you definatly have no idea what is going on.

  • Chances are I may have made your new knee😉😉

  • juggsy75 do you work for conformis because I used conformis i-duo. If you are in UK you may work for smith and nephew , which is not the manufacturer of my knee. Well whatever the situation , the surgen ( who was specifically trained to use all the manufacturer's products of this newer idea of resurfacing, with less cutting away of the bones and also saving the acl etc, was an excellent doctor and the product is excellent , so this is a great thing. However is I am having an e mail communication with a person who manufactured my knee that's really funny.

  • I work for zimmer biomet, an American company

  • Ugh, she's not much of a friend to speak to you like that! I have a friend with fibromyalgia, and she is very active campaigning for understanding of the whole spectrum of 'invisible illnesses'. It's amazing how people assume if you can't see what's wrong, the person with the problem should just shut up because really, they must be well, mustn't they?

    It's just plain naive (or nasty) to say to someone with an invisible illness 'oh, just get over yourself'. Bringing up the fact that other people have terminal illnesses really isn't helpful. I feel very sorry for your friend Jean, but that doesn't mean your chronic illness doesn't deserve compassion. If your friend is saying that only people who actually have a terminal disease deserve any sympathy, she's wrong. What she was probably saying, interpreting her words, was that she didn't want to hear about your problems. Which is a huge shame, particularly as your other friends were being so supportive.

    Perhaps she was having a bad day - you know her better than me. Perhaps she is a friend to be treated with caution... Do I sound like someone who doesn't like to see people treated badly? Not apologising for that :)

  • I think it natural to be upset when someone takes away from you to gain the Centre of attention, and that is what your 'friend' did. Had that experience more than once.

    It is interesting that we seem to have a hierarchy of illness, much as Goldfish commented, with Cancer at the top of the tree. Cancer is dramatic and sexy, AF and conditions like it are not. Cancer gets the majority of the funding, a major portion of the available empathy and I think part of the reason for that is historical - once a diagnosis of cancer was terminal - and part because I have found people cannot cope with the idea of chronic conditions - with cancer you survive or you don't. Implying the you may get better.

    Chronic conditions often don't get better, therefor people feel helpless around it and really do not know how to cope with it, unless you have a chronic condition yourself, which is probably why the people you DO see out and about are expected to be stoical. The old adage Cry and you cry alone but laugh and the whole world laughs with, unfortunately, is true,

    I lost what I thought to be a good friend because I got so fed up with her not listening to me and telling me I would soon be 'better' and why don't we go out for a walk (her way of coping with distress) when I had just told her that Myasthenia is an extreme muscle weakness which exercise exacerbates - I was still very unstable at that stage and getting up and showering meant I had to go back to bed to recover!

    My reaction to people like that now is to observe their behavior and if I can, show them empathy saying something like - ' that must be very difficult for you, I hope you are getting the support you need' - then walk away as I haven't the energy to offer anymore.

    I could write reams on this but looking forward to a lovely day and giving myself a treat this morning with a facial at the spa.

    Very best wishes CD

  • Sadly ignorant people need putting in their place sometimes. You missed a great opportunity by not telling her that you were not sorry for yourself but merely explaining the condition to your other friends as they had asked.

    Having had both AF and cancer I can say that in my case I do not recall any difference in the level of terror I experienced on diagnosis nor for that matter the response from others. On further reflection I remember being almost relieved over the cancer which they had suspected but not been able to find for about four years (prostate) as now we could get on and get rid of it. Fortunately having recently had a third successful ablation meant they were prepared to carry our a four hour operation to remove it and several other bits of me and that and the subsequent hormone and radiotherapy treatment leave me clear at five years thank you NHS.

    To be honest I'm more worried about AF coming back than cancer so you can see which I think worse.

  • Blessings on your Five-Year Clear BobD! Your response is well-put and reflect how we all feel ...lots of us having either had a relative, loved-one, friend, or even ourselves having been diagnosed w/cancer AND at the same time having arrhythmia diagnoses and horrible debilitating symptoms and ongoing treatments and medications that we take 2 or 3 times per day...for the rest of our lives, living with ICDs, CRT-Ds that yes they save our lives (that is GREAT make no mistake) but for some the misfire, or too many shocks or the device that takes 4-5 years to optimize and calibrate properly while the heart gets weaker and CHF makes you breathless and swelling can really affect you badly especially trying to sleep and just day in and day out...and all of this? Just trying to merely EXPLAIN a few tiny little things about LQTS (it's fascinating actually-the subject of ER shows and Mystery Diagnosis, but not funny, it's but horrible) and the common response unfortunately is, sometimes, QUIT FEELING SORRY FOR YOURSELF. That's just a hostile thing to say. Period. I have a "teacher friend " like that...before I had to leave my teaching career to be on disability for all the aforementioned Heart-Only chronic diseases (can't believe I just said that) but after a few condescending, "You will be back, you're fine" she ended up with the Pacemaker a year later (very very unexpected and she didn't like the whole diagnosis she got either...) So I guess in my mind I cannot think of anything I would say except what one friend said, switch the subject to the other imposing party. Yes, I hearing this news I feel sorry for them too. But that whole "Quit feeling sorry for yourself " vibe....geez I don't know. Yes, I would feel very hurt but I would act like nothing and not let on. I'm glad you are letting us absorb some of this for you because it might be me the next day, God knows I've had enough doctors and ERs telling me I was having anxiety when really it was a pulmonary embolism or something VERY heart related turn into something worse because they didn't bother to check it. We are like so focused on our illness because that's how we stay alive, we know alot, we try to explain it to others, we even think doctors will understand ... but really no. That's why there's US.

    I will say this and it's what everyone here said, we are ALL here for you Mazza23, and all of us know what it's like to suffer with this fear and chest pain and being so out of breath that we need a whole day to recover from one outing and always the labs and procedures and surprise visits to the ER or just the Clinic....and actually maybe only WE understand each other! So CHEERS TO THAT!

  • A really depressing experience Mazza which makes us feel frustrated, angry and like we are faking it all rolled together. I agree with CD - the woman in question needed a 'look at me' moment and used you as her platform for attention - horrible lack of empathy both to you and the friend with cancer.

    Enjoy your other friendships and put this one where she belongs - history book.

  • @Finvola An example of this stupid lack of empathy and also ignorance detrimental to her health, is an ob/gyn who is male telling a female patient with uiterine cancer , or ovarian cancer, or run away fibroids and cysts "Oh don't worry honey you don't really need these parts anyway" and thenafter the surgery prescribing artificial hormones and telling her bhrt is just a crock.

  • Exactly!!! With women's health issues the empathy and ignorance factor is truly compounded!

  • I think the medical profession and also TV programmes and newspapers have a lot to answer for when it come to subject of AF as it always seems to be seen as a mere nuisance its about time it was seen for what it is a life changing chronic illness that is very difficult to treat.as for your friend and many more people like her thank god cancer is not the death sentence it used to be.

  • souljacs4 afib give you a 5 times greater chance of having a stroke, also if the only thing that happens is you passs out, how great is that while you are driving a car, crossing the street, or waiting on a subway platform?

  • I have experienced cancer three times (cervical treated by laser therapy, malignant melanoma treated by surgery, and breast treated by surgery and 5 years of hormone therapy which is implicated in my AF). It is AF which terrifies me, and which seems to take over my whole body and emotions when it happens. I don't expect others to understand because we are all so different and although I'm working towards as many lifestyle changes as possible I am more overwhelmed by the AF than anything else. Thanks to NHS I had great care and good prognosis but even with cancer people don't understand and say stupid and ignorant things all the time. Both illnesses can be a very lonely experience. Thanks to all on here for a safe and supportive place, Best Wishes Jane

  • You are so right I think anyone who is living with a chronic illness whatever it be is living on a time bomb (that's what it feels like sometimes) so it would be best to all pull together

    As yourself and myself having more than one problem I think we understand a bit better

    Take care June

  • @Mazza23 Hi do not even bother considering disparaging remarks made by other people. These remarks are the result of either ignorance or malice, both of which are not worth your time. LQTS is often treated with some types of amino acids because LQTS is an abnormal metabolism of the electrolytes as they are going into the miocytes (heart muscle cells). Since this metabolism is controlled by amino acids, this relates to the treatment. I do not know specifically how this treatment goes , but had read about it because at one time in the past a somewhat unenlightened cardiologist told me I had LQTS, but it turned out this was not true. However, as I was planning to take the genetic test for LQTS, i looked at all the types of LQTS, and how they could be treated. I currently do have AF, but have had a successful ablation and prevent any af from happening by sotalol, and wARFARIN l rx. for af, plus specific diet, and supplements etc. all is okay with this. As far as the chf, is this the result of your AF Rx. meds, or did you have it before? Has any DR. or other health professional told you that heart failure can be somewhat treated with Co enzyme Q10, Taurine,? Have you had a blood test for a complete thyroid panel, Total and active forms of T3 and T4, TBHG (thyroid hormone binding globulin), reverse T3, T3 uptake TSH, all the thyroid antibody tests? If not you should. In order for your heart to have enough energy to work properly (Pump enough blood to your entire body and also to relax) it requires that the mitochondria ( energy factories) in your heart muscle cells have enough of Magnesium, T3 active thyroid, and Co enzyme Q 10. Without these 3 things the mitochondria cannot make ATP (energy). This can cause heart failure In other words do you have undiagnosed hypothyroidism or hashimotos hypothyroidism? . Of course heart failure usually means your left ventricle is somewhat thicker- although this also occurs in athletes ( professional or amateur)-but you still need the just listed ingredients. Your blood test should also include "red blood cell magnesium","Co Q10, High sensitivity c-reactive protein, ferritin, homocysteine, iron, comprehensive metabolic panel to make sure the rx's are not damaging your liver and kidney, cbc) ) c-reactive protein is an inflammatory bio marker . If it is 3 or higher this indicates a threat to cardiovascular health. If it is really high such as 14, 19 etc. this usually means you have something called MMP's (matrix metalloproteinases ) in your bloodstream.

    These are produced by elevated COX -2 's, which are inflammatory cytokines produced due to normal metabolisms and sometimes excessively by genetic tendencies. the MMP's devour collagens. Since collagens hold all the cells together (including the heart muscle cells) this puts a strain on the heart. The COx 2 and hence the MMP's can be lowered by a COx-2 drug, however this drug is very bad for you. There is a natural Cox-2 inhibitor called nexrutine---actually a chinese medicine cure from an asian cork tree.

    Don't worry about stupid people making disparaging remarks. Be concerned about getting the correct blood work and seeing if you need to take Co Q 10, taurine, nexrutine (natural cox-2 inhibitor--lowers inflammation) You need a highly educated informed doctor, not stupid lunch companions.

    If you have afib you are at 4-5 timkes greater risk for having a stroke. has a doctor put you on an anticoagulant?

    All of this is what should conern you. Maybe these lunch companions are not helping you.

    It is highly likely that if you told these lunch companions a detailed storyabout the objective scientific approach you were going to take, which sounded somewhat like the big story I just gave you, you would so put them out of their element by a scientific approach, that they would make disparaging remarks about it and/or get up and leave the table because you were scaring them with information and science--something which is probably foreign to their stupid brains. Remember Knowledge is Power, so if you have a lot of information about your medical conditions you can find the best way to ameliorate their affects.

  • Thanks traveler I have to keep well informed as my lqts is drug induced so cannot take a lot of the drugs given for AF also cannot take Flecanide. Because of my heart failure that has improved by the way thank goodness ,I was only giving them the short story as it was supposed to be a get together not a medical convention, I have decided I don't have the energy to waste on negativity so with the kind words from you all I will forgive and try to forget xxx

  • @Mazza23 I do not have LQTS but certain drugs lengthen my QT interval, which is why I am on a very low dose of sotalol. the others that can cause lon qt are large macrolide antibiotics such as biaxin ans AZITHROMAX

  • Solotol is a definite nono I belong to a site called credible meds they list all the drugs that should not be taken I also have a letter from my cardio to carry with me also a medic alert bracelet I spent 8days in CCU after they gave me amiodorone so I don't let them give me anything I don't know

  • That...for one...answered a LOT of questions that were lurking in my mind about COQ10 (nobody told me to ...I just buy it and take it as I have CHF) and the T3-T4 tests I NEVER knew what they were for, I have Sjogren's disease so I have those tests all the time, no idea till NOW! Thanks! Last, Knowing about that c-reactive protein number was important too! I've been on the high side of normal but 3, that's high. So thx Traveler65! You just educated me! And it is SO true, lunch companions are just lunch companions.

  • Firstly that woman is no friend!!!

    I am often surprised and annoyed by the fact that CANCER is the one illness everyone talks about and fears more than anything.

    What about all the people who have long term horrendous dibilitating conditions they live with day in day out

    Parkinson's, MS, Huntington's, Heart desease, Stroke to name but a few.

    And AF is a terrible frightening condition that effects millions and all in different ways it puts us at risk of Heart attack and stroke and there often is little we can do about it and often no cure.

    I lost my father to Cancer and a number of family and friends and I support Cancer Research on a regular basis but like you I have AF.

    You're other friends were genuinely interested in knowing how AF effects you and indeed what it is.

    The other woman is ignorant and rude give her a wide berth and best wishes to you x

  • I really don't know where I would be now if I didn't have this community and the lovely people on here. you have answered all of my questions given me the most excellent advice but best of all you have given me the support when I needed it the most. as the saying goes (we may have all come on different ships but we're in the same boat now) and I must say I am very happy with the company I have on this voyage. Thank you.

  • It's awful being in and out of AF and was for several years daily. Friends and family don't really mean to be harsh, but as you said they don't have any idea what it's like!

    Having had a so far successful Ablation in April, I am now feeling so much happier about life as I am beginning to do things without thinking and no AF.

    Hope you get a chance to have a good go at sorting out. My advise for what's it worth, it just don't wait to long in doing it as quality of life can get so much better!

    Good luck


  • I'd like to thank people for posting because I thought in many ways this was just me. This thread has been so cathartic and eye opening for me, thanks all for taking the time to talk about this. AF is a pretty terrifying thing and it's a lot to deal with, at diagnosis and beyond. So your friend's ignorant and hurtful remark (that was rude -- even if you had a broken arm or whatever, everyone's condition has value -- so although she is unlikely to understand the depth of AF's effect on your life, you don't do what she did if you are even marginally polite -- one friend's cancer does not negate your feelings as a human ... ) has had a silver lining. I was recently in hospital with AF (only 24 hours, I am lucky) and my husband is sitting there looking at my heart rate of 150 or whatever and asked 'why can't you make it go down?" Then he turns to the nurse and asks 'what is atrial fibrillation anyway' and I'm thinking DEAR LORD MAN HAVE YOU LISTENED TO NOTHING I HAVE EXPLAINED for the last 4 years from the first episode. And I know he's a good, kind, loving person -- it's 'invisible' to him and (being female, a mother, etc.) I haven't talked about my terror. I've kept it more or less to myself. So I don't really know what to do about that ...

  • EXACTLY!!!!!!

  • You have all seen the cancer adverts of over 50% is cured these days!!!

    Over 50% of AF is NOT cured.

  • I know exactly what you mean, I was with friends when I mentioned that I couldnt drink tea unless it was de-caffinated, all I got was an eye roll, but it does effect me, its the same with the fibro as you say, if you cant see it, they dont believe in it. Ordinary tea makes my AF jump about like its moved a trampoline in there with it!. Your problem is just as important as Cancer, we've been trained almost to react with horror when the word is mentioned, I hope she does well too, but I also wish you plenty of good days as well. Lyzzie x.

  • Hiya Mazza,

    Am feeling very grrrrr! on your behalf. I know how stupid it can make you feel, that even as an adult some people just make you feel dragged back into the playground.

    I thought you might like to see how others see that conversation round the table.

    I am not trying to rubbish your 'friend' here, (especially as I do not know what her emotional and intellectual challenges might be), but actually this woman made a fool of herself and not you.

    (Your other friends probably have too much sense to take what she said as gospel, but, like any reasonably sensitive person, might have been too shocked to make a response.)

    So remember this person sounds like she is her own problem, not yours. She has opened her mouth and shown her own weaknesses off to perfection.

    First, butting in where she's only heard a bit of the conversation. (Where are her social skills?? ...Oh, er, this is one of my own faults too probably, so moving swiftly on...)

    Secondly, using someone else's shock and tragedy to get her moment. (Aargh even if she really doesn't mind hurting others, surely she must mind making such a fool of herself as this. Note, we have already got the impression that it IS all about her!)

    Thirdly, as we know, she stoops to humiliating you when you are at your most vulnerable to get her little moment. (So sensible friends will notice her cruelty and keep a wide berth; and well... I suppose the friends she has left will understand her...)

    Fourthly it shows staggering immaturity and very limited thinking to compare two horrible conditions and declare one the winner.

    Fifthly, if I was the one with cancer I would be furious!!! How dare she throw my life into the conversation just for a cheap shot!

    And we are all furious on your behalf, this was inexcusable behaviour.

    There is always the possibility that she just lacks emotional intelligence and really cannot help it.

    You don't need to bother seeking her approval. That only gives her the power of approving or not approving.

    Indeed, once you've got over this grisly moment you might feel a bit sorry for her, she sounds a bit clueless.

    Hugs and best wishes.

  • Thank you for this, Mazza. It's generated such a wealth of wonderful replies.

  • You have had a lot of supportive replies. I could not read through all of them but just want to add that my pulse rate went up and I immediately went downstairs and ate a slice of Brownie for comfort. I really felt for you. Fortunately, my weight is just right so I don't need to worry about eating it. It was meant to be a treat.

    In my view people like your friend are just too superficial because they cannot listen and it seems that she took the limelight by attaching herself to something worse.

    What these people fail to understand is that Afib can be a life threatening condition depending on the person. I find that it affects my memory and causes cognitive difficulty so I cannot read or do anything that requires mental ability. The reason is because the heart cannot push enough blood around the body and obviously to some extent starves the brain. My EP told me that he knew a man who could not do his accounting work when in AFib.

    Afib also effects our emotions which stems from the Limbic System: Amygdala, Hippocampus etc. in the brain. I believe we feel fear, although we know intellectually we wont die, because the heart is very much linked to our emotions.

    Psychotherapists, counsellors and even GPs can be very ignorant. My GP told me that I would just have to manage it. Instead, I went and had an ablation as soon as possible and ditched the GP.

    Perhaps you need to distance yourself mentally if not physically from you ignorant friend. You need supportive friends. Friends who are positive about you not criticise you.

    Yes having cancer is worse but our condition is hell and your friend cannot understand that because she is not interested.

    My neighbour died of cancer but his wife was still sympathetic to my plight and I obviously supported her where I could.

    All the best

  • I have had it all like some others who replied to you.

    Seen this discussion before on a German thyroid forum, where some people with Hashimoto's Disease kept telling others who were badly off that they should be happy not to have had cancer. At this time I already had the first bout of cancer behind me and apart from the "death fear" which was much greater with cancer, I suffered much more from the thyroid disfunction, more symptoms, less quality of life.

    Now 15 years later, second cancer attack, lost one breast, chemo etc, thyroid still a problem but not as bad, it's AF which bothers me. Why? Because cancer either kills you or you get treated and that is it. Treatment for cancer is bad, I felt like crap, but I knew it was limited. I could count the sessions (no mets as yet).

    AF is not limited and the four weeks after ablation with all sorts of heart trouble going on and one doc telling me I would have to stay in AF permanently, I wanted to die. More than ever during cancer treatment! Thank God the doc was mistaken up to now and I am back to frequency of before ablation (once weekly) and attacks are shorter and milder than before.

    I HATE AF! I learned to deal with thyroid, I can adjust meds, I even learned to live with the permanent fear of cancer coming back, but AF takes everything out of me. So yes, if it was a question of terminal cancer, of really dying, I would say AF was the better choice. But only then!!

    Tell your friend that, if you even wish her to be your friend now.

    All the best to you, nette

  • So many differing views on the same subject and all very interesting comments.. my pennies worth is why would we expect friends colleagues and loved ones to realise what we are suffering with on a daily basis when so many GP's are ignorant to AF and its effects ..in my experience it's been here's some Tablets go away and come back again when you are feeling unwell no referral to an EP no follow ups nothing..and yes I have changed doctors 3 times in 2 years hoping for a better more understanding of AF and each time the same ..I don't expect people to understand the effects of AF is the big C that grabs all the headlines and commands people attention..

  • True but we shouldn't expect to be rubbished or belittled or our afflictions being rubbished. On a couple of occasions when someone has asked inquisitively how bad that is etc and I have said well AF is covered by the Disability Discrimination Acts there is a marked change in perception.

  • I guess we all deal with "afflictions " very differently my children,my wife, my family,my closest friends are not even aware of my condition and that's they way I want it to stay I would not want anyone treating me any differently because of AF and all the problems that it brings ..but I do expect a certain level of basic healthcare from those that so much confidence and trust is placed...I am just thankful that I do not have any other disabling illnesses that are so much more life affecting...

  • How much you tell people and how much you keep to yourself is very much an individual thing.

    One of the big problems with AF is that the knowledge and understanding and treatment options (including ablations) have changed very significantly in the last 10 or maybe 15 years. One GP that I met in a social setting who was in his 50s said that the total content on arrhythmia in his training was probably only 1 or 2 hours!!!! Possibly an under exaggeration but I suspect true for many nurses or that era. A year ago my own GP (circa 50) admitted (in front of me) to a first year medical student who was shadowing her that Peter knows far more about AF than I do and asked the student had they covered AF and she said in a number of lectures but more in 2nd year.

    After I had my ablation 18 months ago I went back into AF less than 72 hours later and I wrote to EP as he had requested and included a number of ECG printouts form my Kardia and copied in my GP. This was a few days after going back into AF. About 7.30 in the evening a locum GP at the surgery phoned me and spent half an hour on the phone (as my GP was away). She wanted me to go down to the surgery there and then for an examination review, etc. I said I felt there was no need and in the end we agreed that I would see her early the next morning. In fairness to her she obviously hadn't met me, wasn't aware of the details of the Kardia(at that time AliveCor) nor that I had a NICE approved BP monitor. It turned out that she had been a fully qualified GP for circa 9 months and was doing locum work. However she went through the ECGs and marked various things on them and did various calculations and assessments (eg minimum time between beats, maximum time, made a template, etc to analyse the ECGs. She said that they had spent many lectures on AF and Arrhythmia and said it was good to see a real life case. She had not heard of an AliveCor (but had looked it up on the internet overnight) and was impressed and also the fact that EP accepted it as evidence. She also said that she would get one to add to her "tool kit" because of the speed at which you could get an assessment.

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