Does anyone else experience this??

[Harrybaby666]

Hi Gang,

I was just wondering if anyone else besides me has had the added frustration of people around you downplaying your illness and trying to make you feel like there is nothing wrong especially if the doc's cannot seem to get things right or into some assemblance of order for you? I have been getting this from a friend of mine, who means well, and who has severe medical issues (yes, cardiac) and she doesn't seem to understand how physically bad my symptoms are. I see this friend most everyday, but even then, it's still not 24 hours a day, and how would she know how I felt? I don't want to hurt her feelings, but I am the one who is having the troubles with the doctor(s) in my area and I am the one who knows how I feel, so I am hoping for some ideas to help me communicate this to her without hurting her feelings. I keep pushing myself because I know she needs the help, but I was hoping that she would understand that I have my limits too. Thanks for any help in advance, and Oh, I forgot to let those members who know me that I have dumped my current cardiologist, made a list of issues that I need to talk about with the new cardiologist, and I am starting to feel confident that I will get the answers this time. Once again, thanks for the help. Harrybaby666

 

[Missy]

I have had this happen to me, right in my family. But I figured out that some people think it is the right thing to do. And they try to comfort and reassure us by acting like everything is okay and think this makes us feel better. They are trying to stay upbeat and not depress us or scare us. They just don't know that sometimes we need to talk to someone who will really just say it like it is and tell us they know we feel like **** and that we are afraid and they know why. But I have caught myself doing this same thing to other people and am trying hard not to but have to analyze the person and situation.
And sometimes people really and truly don't understand. They think everything is going to be okay just because you are under a doctors care and seem to be getting better. And they really don't understand how bad we are feeling mentally and physically.
I have thought back and have remembered there were times that I have done the same thing with people. Especially when I was younger. We just can't empathize correctly unless we have had some hardship to bear ourselves.
But sometimes we also need someone to tell us that everything is going to be okay. I know I do. So try not to judge to harshly. They usually mean well. And we just have to figure it out. Even though we have our feelings hurt or are mad.
Why don't you try to explain how you feel to this person. I did that to a couple of people and it helped. Some people won't ever get it even if they go through something themselves because their life is all about them.
Sorry to ramble on.

 

[Bryan B]

Harry,

I have experienced this from my employers and my family doctor. I have VSD and AI and recently was hospitalized with endocarditis. I was only in the hospital for 3 days and was on IV antibiotics for 7 weeks (but went back to work a few days after getting out of the hospital). Well something just didn't feel right to me. After about 4 weeks on the antibiotics I was still having chest discomfort and fatigue. My employers and my family doctor both dismissed my symptoms as anxiety (lucky me I also have panic disorder). I insisted on a cardio consult anyway and he immediately told me that my AI had worsened and I needed my VSD repaired and valve replaced. I saw a CV surgeon 2hrs later and he confirmed it.

You need to trust your own instincts, afterall it's your body and you know it better than anyone else. I was hoping my instincts were wrong but they wern't. I would have gladly accepted being wrong.

If in doubt...check it out.

 

[Nancy]

It may not be you Harry, but your friend. You mentioned that she had severe medical problems. Perhaps they are so overwhelming that she is exhausted from them and has no more energy to give. We only have so much strength, and fighting with your body can rob you of the ability to interrelate in any meaningful way with others. I am sure she would be able to reciprocate if she had the energy.

It is also possible that by listening to your problems, it reminds her of hers and it is too much to bear, so she shuts you out, not meaning harm, but to protect herself from overload.

That's the beauty of this site. We can come here and talk about things with people who understand, and it just remote enough to not overload us, yet we can get immediate feedback. It helps a lot.

 

[Harpoon]

There's a certain comfort in denial and it might be a coping mechanism being played by her to deal with your issues, and with her own...

Before I had surgery most of the people who were around me all the time knew I was sick, but only my wife really knew how bad it really could be. I think my father was caught quite off-guard when my condition crashed hard in the hospital. His behavior just wasn't consistent with the idea that I was actually dying and none of us really knew that until I was in the hospital being rushed into surgery.

It can be a funny thing. Sure, you're standing there talking and smiling and moving around. Maybe you're coughing a little but this time of year, who isn't? Most people don't realize the connections involved between a cough and a bad heart, they may not recognize you decreased level of activity, tiredness, sleeplessness, stress, whatever outward signs that there might be something wrong. Even on first impressions during an exam, a doctor may not pick up certain tell-tale clues that there's a heart condition. A child with arunny nose seems quite innocent, but if connected to a few other symptoms like rounded fingertips or a slightly bluish tint to the skin, it might be a congenital heart defect.


Our conditions aren't exactly easy to pick out to the "uninformed." We're not losing our hair or so weak we can't stand. We're not vommitting all the time or not eating anything. The symptoms are much more subtle and really take a larger overview to distinguish, looking at how you feel over days or weeks, rather than that moment.


You FEEL the way you feel, no one can tell you different. If you have a heart condition, it's doubtful that your feelings are just "in your head." Some of those things are very real and problems like an irregular heart beat or reduced supply of oxygen because of a heart condition have a real effect on how you feel, on your mood, your day....

I felt like crap when my lasix wasn't working. I could tell if I had missed a dose, I could feel it. The coughing would pick up, the congestion and this general feeling of "fullness" all over. Within an hour or so of taking the diuretic I felt so much better (when it was working, for a few months before surgery my kidneys just weren't producing like they should and finally shut down) It was a very noticeble change to me.

But only a careful observer would pick it up, someone that was with me before I had taken the medication and then after when it started working on my system.

Ask her to err on the sdie of caution. Maybe you're "not" as sick as you might make yourself out to be, but so what? If you're actually WORSE than you think, then you're in pretty rough shape and need all the help you can get.

I'd rather be wrong thinking I'm sick and calling a doctor about it than right and not addressing it at all.

 

[JimL]

Last Sunday night on the chat session there was talk of incorporating a HD theme on some future VRcom T-shirt, to the effect, "If I have to explain it to you, you wouldn't understand."

There are over 800 individuals who have much understanding of these heart issues here, both pre- and post-surgery. There are surely many others who also understand -- but I don't usually meet them. I have met others with valve replacement issues, but they don't seem interested in this site, they're in some stage of denial.

As I read a book in the evening, I listen to my heart; I never used to be able to do that. After a particularly stressful time, I hear the little inconsistencies, as the heartbeat goes erratic and then slips back into normal.

Here there is understanding; but most people do not and will not understand what a life-changing surgery this is.

 

[Ross]

It may not be you Harry, but your friend. You mentioned that she had severe medical problems. Perhaps they are so overwhelming that she is exhausted from them and has no more energy to give. We only have so much strength, and fighting with your body can rob you of the ability to interrelate in any meaningful way with others. I am sure she would be able to reciprocate if she had the energy.

 

[Abbanabba]

Hi Harry - I'm right with you on this one!!

I know what you mean about people playing your symptoms down. Even though I'm currently on medical disability and waiting for surgery, because I still look pretty healthy, people can't seem to understand just how bad I feel. They don't seem to understand that some days, just talking leaves me short of breath, or if I go out on a Friday night I'm exhausted for the rest of the weekend. If I sleep in till midday I get sarcastic remarks about being "sleeping beauty".

I probably don't help my own cause either because I always make the effort to wear a little make-up to cover the massive dark circles under my eyes and to give my face a bit of colour. Just because I feel like death warmed up some days, doesn't necessarily mean I have to look like it!!

Anyhoo, maybe you need to find a common ground with your friend - if she also has cardiac problems then chances are you're both feeling the same things; perhaps this is something you can relate to her so she understands there's someone else who feels as bad as she does. Then again, maybe she's just one of these people that needs it spelt out..!

Good luck
A : )

 

[Rain]

I?m sure there?s a million different reasons people downplay our health problems.

Personally, I wouldn't discuss my health issues with her.

 

[Nancy]

This thread reminded of an often used phrase when I was growing up, and it didn't matter what kind of problem the person had. And this is what people used to say when someone wanted to vent about their health.

"If you want sympathy, go look it up in the dictionary."

I think it was meant to inspire the person who was the target to keep on going, but it never did that. I also think some people feel they would appear weak if they offered some soft words.

I always hated that phrase, still do, and it destroyed a lot of people because they were reaching out in a time of need. Everyone has need for comforting words at certain times in their lives. What possible harm does it do to offer some sympathy and solace? It doesn't diminish the person offering it, and it helps another human being tremendously.

Kindness never hurt anybody. The world is tough enough, and not getting any better.

 

[fisher6476]

Get The feeling your not alonev?

Get The feeling your not alonev?

Seems like many of us have experienced similar things. Before my surgery many, many people said "Oh, that is routine surgery anymore...you will be fine" 7 weeks after surgery lot's of people saying "See, you look great... isn't it amazing that you can go through that surgery and be back to your old self in 6 weeks"
Oh well, ignorance is bliss so I guess I have to forgive them

 

[Peggy in Alaska]

Harry:

My boss is forever saying, "You sure don't look like you have a bad heart."

I am so tired of hearing that. He has no idea how drained I feel when I finish my 8 hours. I am sick and tired of hearing it, it is like they don't believe I have a problem.

 

[Bryan B]

I just have to LOL at something I thought of. Even though I have run into the same thing at work once I recovered from the endocarditis (they don't understand the underlying damage done) they said I looked so bad right before I went into the hospital a couple of people thought I might keel over at any minute. Now I "look so much better" they don't understand why I need surgery now.

 

[ALCapshaw2]

Harry:

My boss is forever saying, "You sure don't look like you have a bad heart."

I am so tired of hearing that. He has no idea how drained I feel when I finish my 8 hours. I am sick and tired of hearing it, it is like they don't believe I have a problem.

 

[ALCapshaw2]

Peggy -

Tell me why you are silll waiting for surgery?
I don't 'get it'...

'AL'

p.s. Ross - apparently I still 'don't get it' when it comes to doing the 'two step' quote dance...

There's a lot of things I don't get since having OHS

 

[Guest]

Irony rocks .

Yeah, I've experienced this phenomenon more times than I care to count.

But, part of it may be of my own "doing", if that makes sense. No, I don't make a big deal of it...helk, I don't exactly like to talk about it. But, when people know...and don't show concern at all...that, for some reason, bothers me....not sure why, exactly, tho .

Aye.

*sighs*

Work has been a helkish place the last few months for me...on many levels. My cardiologist and regular doctor keep telling me to "reduce stress"...meanwhile, my employeer and managers are making it as difficult on me as they possibly can....

Ah, well....life goes on...and is good...and will get better...someday....I hope .

Cort S, pig valve & pacemaker-enhanced 30/swm
AIM=fc72mc...YIM=knightfan2691 / "The Uniter"..."Mr Road Trip"
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[Harpoon]

Hmmm.....


Just thinking about the idea of valve replacement being a "life-altering" experience and all and yeah, I guess it is for someone who doesn't really have a prior history of heart trouble.

Even if someone did have some idea of what might lay ahead, there are only a few of us, as adults, who have the unique perspective of having always had heart condition, always bieng "different" and always having to explain that while I might look fine, I am not inside....


We don't have issues of denial really, we've been in it from the get-go and having a valve replaced or some other form of surgery is just another step in our journey, not a radical change in lifestyle....

Having "acquired" a heart condition must be a pretty earth shattering experience. Being abruptly faced with your own mortality isn't a very good feeling and a lot of people react with denial, of their own condition and of others around them. Same is true for cancer or any other "terminal" condition. Yeah, we can treat all kinds of things, you might still live a long, healthy life, but, the odds are stacked against you, if only a little bit more than they were yesterday before you saw your doctor. That's tough to handle.

I went through all that I went through just knowing it had to be done, it wasn't an "oh my god, I have to have an artificial valve now" kind of situation, just the next phase of a life long fight rebellion against the odds.

That's how I look at it, I'm just a sappy rebel who doesn't know when to quit. I'll beat this thing if it kills me...

Right? =)


Hopefully, with time and understanding and encouragment, she'll come around. She's dealing wiht a rough road herself, and it takes an extra step to be able to share and listen rather than just brood on your own issues, ignoring the rest of the world.


Pretty lame bs ain't it? =)

 

[Glenda]

I can relate to everyone that posted about this problem of people not understanding how you feel. People are always telling me that I look great. I'm not sure how you are supposed to look when you might be dying! I've had three different kind of cancers within the last three years and now am waiting to have a Aorta Valve replacement. Surgery from the breast cancer left me with a very numb right arm. The doctor removed over 18 lymph nodes under my arm and most of my chest muscle where the cancer was connected to my right breast. Removing the left kidney sometimes seems to overwork the right kidney because I have a lot of pain in that area (if that's possible, the doctor's don't seem to have an answer for that one.) Because of the leukemia my muscles and joints hurt constantly. Then the side affects of Gleevec for the leukemia is sometimes really bad. I've always kept my aches and pains pretty much to myself. Even my husband doesn't really know how bad I feel. I think my family and friends think "what's wrong with her now, she sure looks healthy." Why is it they think people that are overweight always looks healthy? I would like to loose about 60 lbs before the heart surgery. Any ideas? Remember I can hardley walk from one room to the other without sitting down to rest. I have no energy and am so short-winded. My downfall is sweets. I love then and seem to crave them. Here I go again writing a book but this really touched a sore spot. I know without prayer I would not have made it as far in life as I have.

Even when walking through the dark valley of death I will not be afraid, for you are close beside me, guarding, guiding all the way. Psalm 23:4

 

[Raverlaw]

I just don't think it's possible for anyone who hasn't experienced this to understand what it feels like. I don't have CHF or anything, but there are times when I just drag. It's actually nice, now, to know what's causing it and to know that soon I will be *fixed*.

To others, I am the picture of health and I try not to complain to them because I know they will look at me and wonder (to themselves) if I am just a wimp or hypochondriac. My brother-in-law had a very serious case of non-Hodgkins lymphoma a few years ago and literally looked like he was at death's door, especially when he was undergoing chemo and radiation therapy. I didn't understand then what he was going through, even though I could tell from looking at him that he felt awful and that it took all of his strength to make it through a day.


That's why were all together here, isn't it? I mean, besides the valuable information resource that you all (collectively) are, we *connect* because we're sharing a similar experience. So, don't feel bad if others don't quite 'get it' - you wouldn't wish this experience on any of them.

 

[SJJ]

Bill,

Your last paragraph was very nicely stated and that's how I see it as well.

Sue