Heart disease- the “hidden illness”

[tonyhall2015]

One thing that frustrates me more than anything withnpoor health after 3 heart attacks , sometimes severe angina, and the fatigue and all else that comes with it. The lack of consideration from others who have no tolerance to how ill you may be as there looks like there is nothing wrong with you . Tolerance in the work place, on a crowded train wher sometimes I’ve date t not sit in a disabled seat in fear of being shouted at on a long journey and choose to sit and block myself on a dirty toilet as and example . Anyone else sometimes feel that frustration?

[Midgeymoo17]

Definitely. No I never need to use the disabled chair but toilet for my GI disorder and the grief I can get for it is awful. ( I have similar to a colostomy).

Honestly I would say to you sit in the disabled seat but if clearly a wheelchair user or blue badge user comes and asks you to move then move. (I am assuming you are not a blue badge user but I maybe wrong). Ignore people who judge you otherwise.

I totally get the work situation. I am still at Uni but received the following remarks:

(1) “ Your too young to have congenital heart disease”

(2) 6 weeks post op clutching a pillow and with five letters from my consultant over a period of a year “Did your surgery really happen then?”

(3) “You heart condition does not have enough effect to put it on your support plan”

[tonyhall2015 in reply to Midgeymoo17]

Nope no disabled badge . Work full time in a very stressful job and spend half my life hiding my illness in case I get discriminated for it . Very sad . If I had only one leg I would get all the concessions most get . Good luck to you too

[appledore1 in reply to tonyhall2015]

Towards the end of my career in the Merchant Navy (44 years an engineer officer) I began to feel quite unwell. The last ten years especially. The UK government insists that after 50 years old you must have a yearly medical, and believe me it was tougher than a pilots medical. Not one of these so called "accredited by the government" doctors picked up that I could have heart disease. Deep research revealed that among engineer officers in America for example that heart disease, stress, respiratory disease, knee problems, depression....the list goes on, was prevalent. Indeed it is in the UK but the government refuse to acknowledge this and thereby there is no help for UK seafarers who lose their job because of it. The Dutch government give every type of support for their seafarers. Admit that you are on statins, calcium blockers, and the rest of the cocktail and you are immediately failed and thereby that is the end of your career. So I had to fight to continue to work. Two years ago I became so ill that I was airlifted off a ship thus ending my career. Even the doctors at the hospital did not pick up on it. Yes, the hidden disease. I have noticed that a lot of young people have heart attacks, also those that do not smoke or drink. Worldwide research of seafarers now reveal a common link, stress, anxiety, depression, increased workload, long hours on watch with sleep deprivation being the highest factor. Although I had a series of heart attacks back in January and I am now having a quadruple bypass in May, thank goodness and I am now in good hands of the hospital and my GP. Yes the hidden disease and the lengths you have to go to hide it if you know you have it before you are tossed on the scrap heap by certain industries. And also a big thanks to the British Heart Foundation for educating me on this.

[Hidden]

I think you can apply for a priority seat card on the trains, which you can show if someone has a go at you.

Wish you well

[laura_dropstitch Heart Star]

Yes, my heart sinks if I'm feeling rubbish and the underground train arrives with standing room only. We probably should ask for a seat when we need it, but I know I'm guilty of struggling through rather than face getting into a debate about my health

[Milkfairy Heart Star]

We live with a hidden disability.

I have a badge from London Transport saying please give me a seat not all disabilities are visible.

I now always ask for a seat and usually get one without a problem. I have had the odd look and I will say that not all disabilities are visible and invite them to live with my pain for a while.

I struggled to stay at work I hid my angina so well that my managers were stunned that I was given the higher permanent incapacity tier of ill health retirement.

Favourite comment....

You look so well you can't possibly have a heart condition...

I share your frustration

[MathsNicky in reply to Milkfairy]

Same....I was a teacher in a stressful school and was told by the head I always looked so well.....I managed to retire at 55 luckily and it's easier to manage the tiredness without the accompanying stress. The 'not all disabilities are visible' badge sounds like a good idea.

[IanGordon]

A lot reactions or lack of sympathy is purely ignorance. Heart disease is generally depicted in the media as something old people get which results in chest crushing pain with the swift arrival of a paramedic pumping the chest of a blue lipped pensioner. There's incredulity that you can have a severe form of coronary disease, in my instance Aortic Stenosis, yet still walk, talk and on the face of it, lead a relatively normal life. I know a number of forum members have multiple problems to manage but generally if you can't see it, perception is it doesn't exist. Thankfully I dont have to run the gauntlet of a daily commute so my sympathy goes out to those who do and have to grin and bear it.

[Nanne]

Hi Transport for London have a badge scheme for hidden disabilities with please offer me a seat on it, also come with a card. I use this everywhere not just TFL as I feel it should be a nationwide scheme. tfl.gov.uk/transport-access.... It is something that the BHF could really get behind and campaign for nationally. I was very lucky at work but still had to take early retirement. I now have to limit myself in what voluntary work I take on as I can't be reliable. So frustrating

[clarehealsworldwide]

I sympathise with you all & have several several invisible disablitzes as well as heart disease. I carry a "just can't wait" card from the Bladder & Bowel charity, which helps a lot as the queues for the Ladies loo is always long in theatres, stations etc.

I also travel with a walking stick (though I may not always need to) when going by train, tube & for flights at airports. I notice people are more likely to give up their seat for me & also lift my luggage onto the train if I have a walking stick.

Good luck to you all.

Clare

[humph3]

I also have PN as well as heart disease and walk with 2 sticks. I have travelled on the underground and find that folk immediately get up and allow me the disabled seat - if they don't see you a polite request always works. I would not be able to stand on any train and would have to get off if I couldn't sit. Try 2 sticks and a smile!

[appledore1]

Hi everyone. See my reply to tonyhall2015. Yup we are all going through the same problem.

[Suzannedevine22]

Argh am sick to death of people saying you have chronic heart disease?you always look so well aswell,bearn in mind 1.a was 35 2.am 5ft2,3.a was 8 stone,4!!working a crazy busy restaurant usually understaffed and am always running about and singing away always happy (let’s face it life is to short for us lot with CHF/CHD)and into the bargain a looked about 20 yrs old.now all a ever hear from everyone one is HOW YOU KEEPING👊drives me up the bend,ladies that work in the hospital all call me Mrs Fine lol cause that’s what a always say when people ask how a am just sometimes a want to say a feel like shit every minute of the day with 40 something drugs but no one is interested in how shit you feel especially the heart specialist they think we should be grateful we have access to all the drugs disna matter that they make you ill.and a still make my work every day 😭 and at 44 now can’t retire for another 20 years 😭😭 Sorry just needed a rant thanks peeps hope your all on the mend or on the road to it ❤️

[David-75 in reply to Suzannedevine22]

Hi, yep ....me too. HA and 5 stents aged 43; it’s a double edged sword - I don’t want pity and want to get on with life as normal ( especially as I have a young child). Most of my colleagues kind of know what happened but I don’t embellish with details- but I also kind of want recognition that I am not cured and I have a disease and the medication does slow me down at the moment (not really cognitively but sometimes physically and emotionally). I too used to be ‘fit’ playing football , HIIT classes and the occasional half marathon , spot on BMI etc- but I smoked from age 18-30 and I have a sedantry stressful job. However, everyone also was shocked it happened to me. What came over in your post too is the stress; this is something we have to manage now, they know it causes damage but the scale is questioned by medical professionals- personally I think my physical reaction to stress is quite acute ( even on an almost subconscious level - as although I felt/ feel ok, I believe actual physical damage was/is occurring ) - so I am trying to get into meditation and limiting my online time (another curse of the modern age). I hope you are able to reduce your stress too. I know exactly what you mean about the work though - the thought of working another 20 years with the disease makes you question what is it all for....will we get any retirement?. I am learning to live in the now/present and I am doing all I can to halt progression of the disease (diet/exercise/stress management)- hopefully advancements in medical technology will help too. It’s a battle though for all of us, but we can do this. Any time you want to vent - please feel free to contact me ; it’s great talking to others with the same battles. Wishing you good health, David

[Dave_iow]

Hi All I’ve been diagnosed with DCM last year and just trying to get used to my meds (bisoprolol leaving me exhausted everyday) I’m 37 and generally was fit and healthy. Thinking of working another 20 years fills me with dread. And will my pension payments be for nothing?

Mental health is not great at the mo thinking what’s the point!

[MONIREN]

Sounds like we have all come across the judgemental people. I get looks when I park in disabled spaces with ute, even though we both have cards displayed. As soon as I start walking, I have FND, they realise why, but isn't heart disease and chronic pain enough? I too, try to keep positive and upbeat, especially on my bad days. We shouldn't have to wear a sign! Take care. Moni