How many of us exaggerate our symptoms in the hope of faster treatment? And wouldn't most of us on behalf of a loved one who was suffering? And how far does the medical profession allow for this? (When my GP diagnosed my dodgy heart valve he actually told me to exaggerate when I saw a consultant.) Over the past 16 months, I've been reasonably honest, mindful of the pressures on the NHS and appreciative of its staff, to the extent of donating to hospital charities; and I'm aware that many people, including contributors to this forum, have conditions needing more urgent treatment. But I'm currently laboriously working through a series of tests and appointments (three of which I paid for privately) in relation to fatigue following my TAVI.
On one occasion, a friend was so concerned for me that she wanted to call an ambulance. And with less reason a cousin has several times offered to travel 250 miles to take me to A & E. On Wednesday I'm due to have a CT scan at my NHS hospital and am wondering whether I can get there – and back – under my own steam or should I get a taxi. (A year ago I was doubting that I would be able to get from the hospital entrance to Cardiology – I managed to in the end.)
I confess that in my most fatigued and despairing moments I'm tempted to have my scan and then collapse (which may yet happen without any exaggeration by me), in the hope (perhaps forlorn) that the next stage of my diagnosis will be expedited.
Selfish? Desperate? Sense of entitlement?
Would anyone else care to admit to such thoughts?
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Taviterry
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We are similar ages and both had a replacement valve. After a wonderful elation of recovery I too am getting more exhausted. Not as bad as you, but bad enough to spoil my life.
I too have paid for private health care. Which I don’t agree with, but it was pay or die. But I don’t exaggerate at all. I try my utmost to give medics a fair representation. I don’t think I have been overlooked nor delayed . I paid because covid had shut down the hospitals. Saved my life for certain.
I think we should all try to support the medics as best we can.
I never exaggerated how I was as I did not want them to tell me there was anything wrong so just told them how it was having said that having 3 heart attacks might have been a clue for them without me saying anything
But I would never want to think someone that needed treatment more than me I was taking their place to try and get mine done quicker if I needed any
That is just my opinion and how I see things I would feel to guilty if I played on how I really felt just to try and get up the que and would struggle to deal with that x
I have a few terrible mornings after wakening in which I have a score of conflicting emotions, including despair, but am OK by midday. When I saw a consultant on March 5, I 'd been feeling good for more than two months. I gave five phials of blood for tests but felt very tired getting home. I stoically stuck with the fatigue until ten days ago, then rang up to see when my follow-up appointment, due in early April, would be. I mentioned my fatigue, but couldn't get beyond Admin because I hadn't been allocated a nurse. Eventually I threw a wobbly, mentioning that I felt like dying during extreme fatigue (no exaggeration there). A consultant did ring me the next day and agreed that I should have recovered from the blood tests by then and arranged the CT scan. TBH Admin's inflexible gate-keeping did lower my esteem for, and patience with, the NHS.
The Admin gate-keeper took it on herself to advise me to ask my GP for repeat blood tests as those taken on March 5 would now be out of date ... I was still wobbling when I rang the surgery and the receptionist was VERY kind and sympathetic, pointing out the flaws in Admin's advice (that I had already sussed for myself). She added me to the GP's list of call backs that afternoon, and he too agreed with me that the advice was wrong.
I guess that 15 months of being patient and understanding took a lot of nervous energy out of me, as has the post-TAVI fatigue, leading to my wobble when I felt I had no-one to go to.
i was diagnosed with heart failure, the fatigue is terrible, i still take pain with Angina, and suffer anxiety with everything that has happened, I have never had to exaggerate anything, but I have a gp at surgery who makes me feel I’m wasting his time, because my obs were all good, and i took heart attack weeks after seeing him, everyone else at gp tells me to go to a&e as they would rather it turned out to be my angina/ anxiety and not a heart attack, but if you are feeling this fatigue I would let them know and don’t think you would need to exaggerate, hate feeling ill
I can’t remember where I got this from but I have read / heard doctors tend to assume a patient is lying / exaggerating and automatically downplay symptoms. So the person who tells the truth may be undertreated and wait longer as the adjustment could be made in the mind of some doctors and so deemed less urgent. Someone who exaggerates may get attention much sooner as a result. Unfair.
Personally I don’t think someone should exaggerate nor get people’s attention just cos they shout loudest. If the issue is legitimate and it is explained without resorting to “throwing a wobbly” then that should do the trick but guess it doesn’t always or it works because the staff are afraid of complaints????
We can only hope doctors are objective and determine need upon both an empathetic understanding of a patient’s symptoms and experience as well as impact on their life as well as what they see as evidence via tests / scans.
I know that may be an oversimplified and maybe even naive view but one can hope truth prevails alongside persistent reiteration of one’s symptoms and their impact. The truth will out!!!!!
Probably quite easily, after I fell over two days ago, slumped on to my bed yesterday afternoon and slept for two hours, and spent the last two nights sleeping in my day clothes because I was too tired to take them off! After my various scans last year, I'm certainly going to need a helping hand or two after I emerge from the scanner on Wednesday.
I didn't say that any fall from the scanner would be faked, but I'm definitely at risk of stumbling. Just had a long conversation with my cousin who's almost insisting that she travels down 250 miles to take me for my CT scan. She didn't like the sound of my falling over two days ago, nor that I've been shivering with cold for the past week. I've been saying that it isn't necessary. We're going to discuss the situation again tomorrow.
This is confusing, I will bow out as I thought the post was about exaggerating symptoms to get an ahead in the queue / get treatment faster. And you’ve explained you could fake it if you wanted.
Again I hope you get the support and help you need based on a truthful assessment of your issues.
In my opening post I wrote "I confess that in my most fatigued and despairing moments I'm tempted to have my scan and then collapse (which may yet happen without any exaggeration by me), in the hope (perhaps forlorn) that the next stage of my diagnosis will be expedited."
Such moments date back ten years to when I had a nasty insect bite and I felt that I would never be able to get out of bed, how would I eat, how would I contact people and so on. My parents, who'd died eight years before, would "appear" and I can recall saying "Hullo Mum, what are you doing here, I thought you were dead"!
(The bite was incurred when I was working in a country park next to the Atomic Weapons Establishment and well known for its ferocious midges, but I've avoided becoming fanciful about that.)
As well as those who may exaggerate lets not forget those who understate their symptoms as well and can equally cause problems for the NHS. There are many (including me) I was asked (nicely and told off) why you didn't come to see us before the .... hit the fan and I told them I thought you would be too busy and It was just me getting older.
I don't think I do, perhaps for the reason I am not desperate enough, not morality. Also I think exagerstion can be confusing for the medics and may result in the wrong treatment being administered.In the course of my volunteering I advise a lot of people with health problems, some of whom pursue their GP and consultants relentlessly for the holy grail of a cure, a repair, a restoration of normality, often I suspect, with a degree of exaggeration, implying desperation. I have seen the effects of, what looks to me like unnecessary, unsuccessful, and life changing surgery, or mind bogglingly lists of potent complex medications given to desperate and demanding patients by desparate medics. That's my take anyway.
Some of us get confused about to whom new posts are directed, but if you're replying to me and my opening post: hey, I'm the guy who four months ago rejected an offer by a friend to call an ambulance ("oh, you're so stubborn and it's very annoying") and nine times have rejected offers by my cousin to take me to A & E! (And when she rings me in 30 minutes' time it will be ten.) So: am I stubborn, foolish, selfless - or am I just dreading the A & E process?
Bottom line is be honest with yourself and others. Don't be in the mix of misleading the professionals or family. If you are 10/10 suffering then don't procrastinate, if pain is 1/10 or less don't be a drama queen. Truth is the best option...... remember the boy who cried wolf!!Sorry if I offended
Have you been tested for anaemia? You mentioned how cold your hands and feet are and that was a symptom of iron deficiency anaemia for me. I was sleeping with 10.5 tog duvet, 6 layers of blanket, leggings, fkeecy pjs, bedsocks and hot water bottle - and was still cold!I was also extremely fatigued.
Just thought I'd mention this, although I feel sure you would have had FBC done more than once whuch would show it up.
I hope you soon get some answers.
I don't think you need to exaggerate anything. It sounds to me that they need to make more effort to get a diagnosis and start some treatment.
Thanks, MoyB. Yes, I've been borderline anaemic since the insect bite and my blood values altered for the worst post-TAVi compared with six months before. The Admin Gatekeeper was with the Haematology Department.
I'm saying more about Me than I intended when I started this thread but ... I had a 17-minute telephone chat with a doctor at the German makers of my valve and he said that I should be tested for haemolytic anaemia and have an absolute reticulocyte count, something omitted from the two sets of comprehensive blood tests I've had. There was no reaction when I passed this onto to the NHS haematologist.
My GP asked why I hadn't gone to him earlier. And last year during one of my scans I stumbled badly after changing into a gown and I'm now unsteadier.
With exhaustion, a fall, a collapse and shivering in the past few days, perhaps I should be asking shouldn't I go to Casualty anyway, rather than wait to see a haematologist in at least a month's time. (My GP said that my condition was beyond his competence but did glance at my blood values and mentioned that one could be an indicator of cancer.)
When my friend wanted to call an ambulance, she was with me and wondered if I was having a stroke. On Friday she was due to visit me before returning to Ukraine, but I had to cancel at the last moment because I felt so bad.
On the question of morality, would we be so stoic if a spouse or child was involved?
I think your last question says it all, really! No, we wouldn't, would we. Get yourself off to the hospital when you're feeling bad. Don't wait to get worse. Xx Moy
Hi Taviterry.Over the years of giving advice about filling in forms for various health and social reasons, I reassured my clients that there was no point emphasising how they felt on a good day - it would not get them anywhere. Tell how it is on a bad day.
Yes we probably minimise how many units of alcohol per week - that is pretty common. And maybe the medics are sceptical on that one. Drug addicts are also somewhat unreliable.
But mostly people minimise their symptoms, but it is best not to. The stiff upper lip is a common trait. Along with grin and bear it - I could go on.
Hi Taviterry, I have often been told I have a high pain threshold, when I had my MI, shortly after walking into A&E I was asked the question " on a score of 1 to 10" you know the rest, my answer was " less than 1" it was uncomfortable but not painful. The nurse triaging me very bluntly said " put him in the corridor for now" that was about 8.00 am on a Tuesday morning. I was honest with the medics the whole time, as a result I didn't get the 7 stents I needed until 6pm on the Thursday. The consultant told me 3 times over the next couple of days just how lucky I'd been, his opening comment after the procedure was " you've just had a widow maker but somehow your still with us". As a result of the delays in being treated the left side of my heart is now permanently damaged.If/when something like this happens again I shall be exaggerating a little, not out of proportion, prior to being driven to hospital by a concerned work colleague, I had phoned 111, answering the questions honestly I was told " see if you can get a doctors appointment!
My husband never exaggerated his symptoms if he is ill with his heart condition and MS he is, when he eventually had his angiogram, which he had to wait for he had 99% stenosis and needed stenting straight away. Also his mobility is being affected with his MS, which he finds frustrating. He usually has to wait for appointments and treatment and we once paid to see a cardiologist after which he waited 4 months for the angiogram on the NHS, which is when he was re-stented. The NHS is struggling and even urgent referrals are having to wait a long time. If you are waiting on the telephone for an ambulance as your husband is getting heart attack symptoms you are not exaggerating and getting told there is a 5 hour wait for an ambulance and can you get to A and E by car yourself is not funny. His own doctor rang us up while he was having the attack and the first responders had got to our house, stating he needed to go to a hospital where they had a cath lab and have an angiogram straight away. It did not however happen and he had to wait a further 2 weeks for one where he was stented straight away. I can assure you he was not on any occasion exaggerating his symptoms. I could go on but my husband like many others is genuine and until things become an absolute emergency has to wait. When I mean emergency when my husband had his first heart attack I drove him to the hospital myself as he fell ill in the car and he was climbing out the window of the car gasping for breath, when we got to the hospital I shouted at some ambulance staff, who ran to him straight away. The registrar on duty gave him a clot busting drug to disperse the clot that had split his artery and the consultant the next day said he had saved his life. So yes the NHS is good but stretched to its limit at the mo.
My biggest problem is rating pain, as I live with chronic pain. Plus I struggle to express myself and find they use the same questions but phrased differently. Plus I'm female and symptoms are different. I have very mild symptoms and still need stents, with 90% blockages. I'm finding it stressful second guessing. Hope everyone gets the help they rightly deserve. Take care. Moni
I think doctors automatically dismiss at least 50% of what you tell them. They seem totally disinterested in how a person feels, the only interest is in test results.I had to laugh when reading one reply about alcohol, I don't drink alcohol at all as I take strong pain meds, at A&E on one occasion I was asked how much alcohol I drank, gave my usual reply of "None", and was then asked, in a stern manner, "Why?" It took some time for me to realise that they possibly wondered if I was a recovering alcoholic.
When I saw the haematologist and gave five phials of blood on May 5 I was feeling great and projected positivity. It would be different now.
When I was waiting for my TAVI last summer, I was required every Monday to fill in an online questionnaire about my state of health and also speak with a nurse. She was always very sympathetic (if unfamiliar with much British idiom). I did exaggerate once 🥵, after I had twice tumbled over from a crouched position, ("What is 'crouched' please?") and I described this as falling over. She always ended by telling me to go to A & E if my symptoms worsened. "What good would that do," I thought to myself.
I almost find the opposite …doctors try and play down anything saying not to bother…nurses and other professional seem to be more empathetic! This maybe just a symptom of doctors “ bedside manner” disappearing!
I'd ring the hospital and arrange for one of their lifts.Explain you can't cope with the drive and your symptoms, that it doesn't feel safe....that will add on your record how much your condition is affecting your ability to do things as well which moves them along with treatments.
I've never exaggerated my conditions over the years but I've definitely learnt to stop feeling like I'm being a weakling and stopped underplaying them.
I've learnt that you need to tell them how bad you feel on your worst days not your best.
You need to have a good diary and show them how often you are getting episodes in a day/ week.
You need to explain how much it's getting in the way of you doing normal daily activities and your quality of life.
If you are stuck sitting in a chair or have to go to lie down after simple things with symptoms tell them.
If you can't walk to your front door and back without getting breathless tell them.
And use their red flag words, the things that bump you up the list as being in more need of care.
Things like , I don't do xxxxx because I feel "unsafe" doing that.
My "quality of life" has become bad and it's affecting my "Mental Health".
I cannot do simple things anymore without " struggling" and getting symptoms, and I don't feel safe doing things as it feels quite " dangerous".
People get into the habit of playing down how bad they feel and struggling on with many health issues.
Either because they don't want to worry others or don't want to admit to themselves how bad they feel.
It's a bad habit to keep up when you have a chronic illness or you genuinely need help because you are ill.
It's not moaning to tell the truth.
Just use simple , honest words when you tell people how you feel and how they could help.
Honest but Positive.
Not just with medical professionals, but your family and friends too.
Learn to say No and ask for help.
When you do your physical as well as mental Stress levels reduce by at least 50% and it makes a big difference to your symptoms and recovery too.
I've learnt that over the years and it's been a life changer for me , as well as ensuring I finally got the health care and benefits I was always entitled to but didn't receive because I'd always tell people how I felt at my best and not at my worst.
You also always need to request copies of the letters to be sent to you not the GP to ensure the facts are right and you know their plans.
And ask for an approximate time when you will get your treatment or you should ring if you have heard no news.
Then when that time comes , if you've not received news, ring up and speak to the Department, explaining how you feel again , this is how people get moved up the queue and get treated in a more reasonable time.
They expect it , it's the people that chase things up in a polite way armed with the facts that get seen quicker every time.
If you keep quiet you just keep dropping down through the gaps because it gives the appearance that your case isn't as urgent as it probably is.
You say "if you've not received news, ring up and speak to the Department, explaining how you feel again".
That's what I tried to do when mildly enquiring about when my appointment would be. It was being unable to do so - and being given inappropriate advice by an unqualified, if well-meaning, Admin employee - that contributed to the many different and sometimes conflicting emotions that I feel.
I understand, it feels like a full time job doesn't it. I get fed up myself, usually asking the question and then asking it again just to make sure they actually got things right. Or having to ask them to check with the consultant then ring me back then ringing on the same day if they haven't .
There is nothing that makes you feel more ill than trying to get well , at least that's how it feels sometimes.
Hope things are resolved soon , if you can distract yourself with something relaxing that you enjoy in between the treatment stress it can help with those emotions.
What I do when I know I desperately need to be seen quicker as I feel so ill is to email the surgeons secretary or the consultant you are under and ask if you can get an urgent appointment and why. They always ring you back and maybe ask some more questions if the consultant thinks it is urgent you will be seen right away, or dropped into a cancellation.
No matter how I have felt, including despair, frightened, upset or even terrified, I have never exaggerated my condition or feelings, to the point my wife always come to these appointments - just to make sure I do actually disclose the actual situation and to be fair, as a fan of 24hrs in A&E, hear the staff mention how us slightly older folk "Don't want to be a bother" or "Sorry to bother you" or " I don't think I am ill enough to be here" or "Just give me an asprin/plaster/stitch and I'll be on my way. So actually my answer is no, I have never exaggerated only wanting to be made well again. This answer is not intended to be judgmental it is purely my outlook and findings having seen quite a few of these hospital programmes. When it comes to the treatment of relatives, all I would expect is that they get a fair hearing and treatment, any intervention by me would only be because I thought they were being ignored or bypassed! Something I would think any human would do for a loved one.
Tomorrow my cousin makes the long journey from North Wales to accompany me to my scan, still wanting to take me to A & E first. Looking at the haematologist's "plan" for me, it says to "seek medical advice [for] weakness or abnormal sensation". I certainly tick that box, but with my GP saying, reasonably enough, that my condition is outside his expertise and my being unable to speak with a medical professional in Haematology, I'm left only with A & E ...
But I've just realised there's an email address for Haematology, so I'm going to use that to update the department on my condition and to copy the email from the valve-maker's doctor. Seems sensible, rather than passing on the information when I see a consultant in a month or more's time.
Well, it finally happened. I went to Casualty. Yesterday it seemed that ice water was flowing through my veins and I had to return to bed for several hours.
Luckily my cousin Bethan was on her way to visit me and on arrival said that I looked terrible and took me in a taxi to Casualty, where we had excellent service. In three hours I had an ECG, some comprehensive blood tests and a very long chat with a doctor.
Everything was puzzlingly good, with some improvement, and I am no longer anaemic! The doctor wondered if the reason for my distress might lie with my thyroid, but a test last June showed that was OK.
There are a couple of readings that mean that further examination is necessary, and I have an appointment with Haematology on May 31.
Today Bethan accompanied me to a scheduled CT scan of my pelvis. I was a bit concerned because the appointment letter said to drink 1.75 pints of water beforehand, and I reported to Reception still with a pint to drink and a need already to go to the toilet. I explained my dilemma, and a very pleasant receptionist said that I had not needed to drink anything beforehand as the scan wouldn't go as far as my bladder, and even checked with the radiographer. Big relief!
On both days all the NHS staff were very pleasant and efficient.
No, I'm a daft Yorkshire GenX, I do the opposite. Raised with a "shake it off", don't cry wolf, "you'll be reyt" attitude, by the time I seek help I've exhausted all avenues and I'm at my wits' end. Then I end up in an NHS queue sinking deeper in to a hole of hopelessness until I accept my new normal and give up.
Over 20 years with a hiatal hernia, GERD, gastritis, meds, eating a bland diet and not after 4pm, sleeping (if you can call it that) sat up. 20 years of arthralgia of unknown cause. 38 years of menorrhagia and dysmenorrhea, diagnosed then never pursued because they just kept throwing birth control pills at me until I gave up because of the side-effects. I never wanted kids, I wanted an endometrial ablation, now I'd like a cardiac ablation, in fact, both would massively improve my life.
My heart probs were a shock, so I paid out of pocket for a bunch of tests, got the results and they're OK, but I have no money or energy do do anything further, I'm sat on another very long NHS, low priority waiting list, back to managing myself.
Luckily I've made it to 48 without anything terminal happening. I do feel wretched most days and don't function particularly well but I do my best. I don't travel, I don't take holidays, or socialise much, but my house is clean and I still work and pay my taxes. There are always people in a worse position and I don't have the audacity to exaggerate to jump the queue.
Thank you for being honest, it has made me take stock of my situation, but having run out of energy, I probably won't do anything about it.
At least I've been able to help someone else a little! As I tried to say earlier on, my thoughts of exaggerating only happen when I'm in one of my "pits of despair" that include contemplating the best way to die and one that is least inconvenient to others.
Just finished drafting the email to the senior haematologist at my hospital, concluding with "the valve-maker sent me four articles, and I hope that I am not being overly presumptuous in forwarding one to you"! That's me trying to be Tactful Taviterry.
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