Have you ever been viewed differently because of a medical condition? (Rant)

[Alysser]

I am just so so so fed up with this happening.

I've had a heart condition since I was born. I have tetralogy of fallot or something like that. I had open heart surgery when I was five and some procedure at seven but that's been the extent of it. The only lasting effect this stupid issue has left me with is a pure hatred of hospitals and it seems the image that I'm a weakling on some level.

It's mostly my parents. Of course, yes, they're my parents and maybe it was scary for them to experience but I got over it. Shouldn't they? As a kid, I wasn't allowed to play sports much. I played basketball, golf, dance, and horseback-riding. I really wanted to play soccer and karate - no too much running and too much of a contact sport. Doctor told them this and they flipped and said no. Believe it or not, I've proven the doctor wrong many times over. The doctor also told me I shouldn't play basketball - I did fine. Also said kayaking was too strenuous, but I did that fine too. When I got a job as a costume character at 16, the doctor was shocked that I could handle it, yet still warned me against it. I had that job for three years. It was a summer job. It takes an EXTREMELY fit person to do it. She warned me against doing the parades to. Walking the route which is at least a half mile in a heavy character suit, piece of cake and I did it for a whole season and a half My parents tend to think the doctor is always right, yet I proved them wrong multiple times. I'm not allowed to get a tattoo, not even because my mom hates them, but because it'll magically somehow affect my heart because of the ink. My mom gets mad when I bring up how "strenuous" my hike or my work-out was. I go to the gym at least 3 times a week and try to hike at least once a week. I went on a 6 mile hike a few weeks ago and she FLIPPED on me about how I have no self-preservation. I apparently can handle it. I may get tired more easily, but I can still handle it. A while ago I was looking into a job as a Conservation Officer/Game Warden. I'm not saying it's for me. But my dad immediately got annoyed with me and said you'd never get the job because of your heart condition. As a test before you get the job you need to pass a physical and fitness tests plus an academy of sorts. If you can do that you can become a Warden. Never did I see "heart problems" listed as a disqualifying factor.

Now this image seems to have gotten to friends to. I've been good about not telling most of them. A lot of them literally don't know because I'm just sick of the pity party they'll throw and the excuses I get all the time. I was at an amusement park the other day and one of them who knows about it said I shouldn't be going on roller coasters. There are signs that warn against going on with heart problems. I've never not gone on a ride because of my heart condition. That irked me. A few times my friend has said I should come to her dorm to visit but I'm not allowed to drink because of the heart condition. Let it be known, I don't drink often but COME on, really? I was talking to my friend today about a new work out she started and told her next time she was doing it, maybe we could do it together. She said "No, I'm worried about your heart..."...I got really annoyed at that.

I understand you care and everything, but I'm tired of being treated like an invalid. It's not some dabilating disease that is going to kill me if I do some "strenuous". I guess the reason I've become so interested in exercise and weight loss (aside from weighing 160 lbs at one point...no thanks) is because I've always wanted to prove people wrong. I'm not the fittest person on earth and I'm not claiming to be, but I want to be treat normally. I'm sick of people worrying about me because of this stupid flaw I have. It seems to often be used as a convenient excuse for my parents.

I just don't get it. I've proven myself over and over again, I don't get why I am still being treated like a weak, fragile shell of a person.

Anyone else ever have this happen to them?

[caseysmom]

That must have been horribly stressful on your parents and no doubt they are overprotective because of it, can't say I blame them something like that is sheer hell for a parent. Your friends on the other hand should listen to you and treat you normal.

[Catty1]

Have you told your friends how their comments and attitudes make you feel? Maybe they feel they'd be responsible IF anything happened to you, which is bull.

I would guess you get yearly checkups?

The next checkup you get go to a different doctor!!! If s/he thinks you are doing just fine, maybe even ask them for a letter!

If you don't get checkups, please do. Even people with NO medical conditions get them.

I have a couple of so-called "invisible disabilities" and am very careful who I tell. People can be very stupid, that's for sure!

{{{{hugs}}}}

[Karen]

Alyssa, don't let it get you down. Your heart may be stronger than the doc thinks it would be at this point, maybe you should ask for a stress test and a scan to be able to prove, one way or the other, how much it can take. A friend of mine had a heart murmur all while he was growing up, and yet when he was in his twenties, the doctor told him it had since gone away, and his heart was now normal. Ask the doctor what the warning signs would be were anything to happen, and promise to be cautious and never do anything just to prove you can.

And it's wise of you not to drink too much, and in fact, I can attest to the fact that if you decide to not drink at all, that can be fine, too. I made that decision for my own reasons when I was in college, and so was always the one who was sober and able to make sure my friends got home safely. And I had a perfectly good time at bars and parties, and never threw up on anyone, unlike many people I knew. I usually drank ginger ale, or sometimes asked for a mix of ginger ale, orange juice and cranberry juice, and folks would assume I was drinking some fancy cocktail and not bug me about it.

When I was a kid, my friend Robin's brother died on the playground at school, because he had a heart condition, and was not supposed to run and play, but he ignored that aide, and was playing kickball with his friends at recess. He was in third grade, and died on the base path.

Do get stuff checked now, so you know, as an adult, what you can and cannot do. And hopefully, you can have a cardiac specialist explain why is or is not up with your ticker, and live life accordingly!

When one of your friends wants you to not do something "because of your heart problem" but you know it is perfectly okay for you, just tell them "I may have a heart problem, but my brain works just fine. Let me decide for myself, please!"

[mrspunkysmom]

Yes, I have. People make assumptions all of the time. I have a few non-obvious ones I was born with and one obvious one. My knees are slightly double jointed, meaning the knees can wobble around at times and I can fall. People look at me like I'm nuts. No, I'm just careful these days as I am tired of falling down. The ligaments are loose too, so that makes it fun.

You need a checkup and changing doctors to get a second or third opinion is a good idea. Doctors are people, too, and can be as close-minded as other people.

I will say that activity that is not too strenuous for you is probably better for you than laying around. Just don't overdo it.

And double check the name.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002534/

Let us know if you get a second opinion.

[pomtzu]

I can very well understand your parent's concern, and to some degree, that of your friends also. But if you can withstand the terrible heat of full costume in the middle of summer in NJ, then maybe there really shouldn't be so much of an issue.
I don't know where you had your heart surgery, but maybe you should consider a second opinion and more testing to see if you are really as fit as you think you are. It sure wouldn't hurt, and just might settle some issues as to what you should and shouldn't do. Maybe consider Deborah Heart & Lung Hospital, if you haven't been seen there - and if you have - maybe another specialist with a different perspective.

Not trying to scare you - but this was a first hand experience with me - very close to home. My nephew (my brother's only child), was born with a hole in his heart. He didn't have surgery for it till he was older - (maybe 7 or 8 I'm thinking), since the doctors thought it might repair itself. By the time he was strong enough for the surgery he also had to have one lung removed due to the damage incurred with the heart condition. But he lived a normal life after that, with few restrictions. When he was older (late 20's to early 30's), he started having more health issues, and ended up having to be on oxygen at night because of his low oxygen levels. He also could not tolerate the heat even tho he grew up for most of his life in south FL. He and his wife also had a home in NC, and he would stay there in the hottest months, and just go back to Palm Beach when it was necessary or he had an appointment with his specialist. I last saw him in the Spring of 2004 at his father's funeral where he delivered the eulogy, and he really looked very healthy - just the picture of health really, and I was so pleased to see how well and fit that he looked. However - less than 5 months later he was dead - at the age of 40! He was back in NC and hadn't been feeling right, so made an appointment with his specialist in FL, and set out to drive down there. He never made it. When he didn't show up at his FL home at the expected time, and couldn't be reached on his cell, then his wife reported it to the FL state police, and they started searching for him. He never made it as far as FL tho, and the GA State Police found him dead in his car right at the GA/FL border on the Interstate, slumped over in the front seat. They speculate that he pulled over because he was feeling ill, or had pulled off the road during a heavy rain, since they were able to backtrack timewise based on a receipt for dinner that had a time stamp on it. The autopsy determined that he died from respiratory distress - which boils down to a heart attack. He was found around 1 a.m. and had been dead for several hours - with cars whizzing by and never stopping to see if there was a problem since he had his flashers on. What a sad and lonely way to die.

Sorry - I didn't mean to ramble - just trying to get across the fact that even tho you may seem to be alright, and look alright, there could be something that you would never expect - just waiting around the bend. Yes - I know - we all face the unknown - just hoping that you will be VERY careful without having to live like "The Boy in the Bubble".

[Cataholic]

When I was a kid, my friend Robin's brother died on the playground at school, because he had a heart condition, and was not supposed to run and play, but he ignored that aide, and was playing kickball with his friends at recess. He was in third grade, and died on the base path.

Dear Alysser- you are not a parent, and as I read the above from Karen, MY heart about stopped. I can't imagine the pain- the sheer hell- of what your parents must have gone through with you. A large part of me says you cannot grasp that yet, and you need to 'get over' their inability to love/protect you from something they have NO control over.

Second, why do you need to tell a single soul about your heart condition? Your friends have no need to know anything, and it can only be because you have shared too much with them that they have the knowledge to ask/inquire/comment.

Third- if I had a heart condition, you could bet your life I would A) know it by name; B) know my current status; C) have been medically checked out by several doctors at your stage. Take responsibility for your life/heart, and get the knowledge that you need to put your own fears at risk, and educate those closest to you- if necessary, about your condition.

None of us, at 15, 19, 22...think we are going to die. Most of us are blessed not to. Please, know more about your own health/heart in case it IS an issue.

And, frankly- you are an idiot to go on roller coaster rides with a largely unknown heart condition. Please- if you cannot think of your own preservation- think of your parents.

[Catty1]

You had the name right, Alysser. Here's a bit of what I found. I've bolded items that might be good for you know - I don't know what kind of repair you had.

http://en.wikipedia.org/wiki/Tetralogy_of_Fallot

Untreated, Tetralogy of Fallot rapidly results in progressive right ventricular hypertrophy due to the increased resistance on the right ventricle. This progresses to heart failure (dilated cardiomyopathy) which begins in the right heart and often leads to left heart failure. Actuarial survival for untreated Tetralogy of Fallot is approximately 75% after the first year of life, 60% by four years, 30% by ten years, and 5% by forty years.
Patients who have undergone total surgical repair of Tetralogy of Fallot have improved hemodynamics and often have good to excellent cardiac function after the operation with some to no exercise intolerance (New York Heart Association Class I-II). Surgical success and long-term outcome greatly depends on the particular anatomy of the patient and the surgeon's skill and experience with this type of repair.

Ninety percent of patients with total repair as infants develop a progressively leaky pulmonary valve as the heart grows to its adult size but the valve does not. Patients also may have damage to the electrical system of the heart from surgical incisions if the middle cardiac nerve is accidentally tapped during surgery. If the nerve is touched, it will cause abnormalities as detected by EKG and/or arrhythmias.

The use of antibiotics is no longer required by cardiologists and varies from case to case.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002534/

Expectations (prognosis)
Most cases can be corrected with surgery. Babies who have surgery usually do well. More than 90% survive to adulthood and live active, healthy, and productive lives. Without surgery, death usually occurs by the time the person reaches age 20.
Patients who have continued, severe leakiness of the pulmonary valve may need to have the valve replaced.

Regular follow-up with a cardiologist to monitor for life-threatening irregular heart rhythms (arrhythmias) is recommended.

[Asiel]

I can understand how you feel . I was born with a heart murmur and a few other serious conditions. One condition the doctor kept from my parents, he was the kind of doctor who tried to protect patients and the family. This doctor was quite old fashioned so he thought he was doing what was best...as he later admitted, I had the issues and nothing could change or help and he thought that keeping quiet about it would be less stressful for my parents. Of course he put restrictions on just about everything . Fortunately I wasn't the kind of person who could just sit around, I had to be moving . As I grew up I joined a baseball team, got into riding, skating, skiing, swimming, and of course climbing trees like every normal tomboy will do. I know my mom found it hard sometimes and she would worry a lot but we always came to a compromise. Like accepting early bedtimes imposed by the doctor, coming home for lunch so I could nap before heading back to school, a 30 minute rest after school, and not getting cranky when I was bedridden or had to take time off school for a few weeks. My dad was the one who talked my mom into letting me live a normal life and he was the one who could help wash away her worries and that helped so much. I think the quietest times in my life was during the summer at the cottage when I would go fishing with my dad almost every morning ,my mom was thrilled that I would be sitting in a boat for a few hours. Growing up none of my friends treated me differently, some did wonder why I got sick so may times but kids take things like that in stride.
As I got older the conditions worsened and one day I ran into major trouble , the pieces had to start being put together, we were all shocked finding out everything but I soon forgot about it and continued with my life. Then I got another diagnosis that took a few yrs to really sink in. This curtailed my life in different ways but I found ways to cope and while living a different life with more restrictions I just found different, quieter hobbies out of necessity and things turned out great. I retired from a job I loved earlier than I would have but I still kept doing some work from home, thankful to my bosses for that. Very few people know of my health issues , I do land in the hospital quite often but when that happens I'm only allowed close family, no other visitors so that keeps anyone from finding out anything, I always find ways to fill in the gaps.Often I just say I had to go out of town and no one is the wiser. Do friends and relatives treat me differently, not really. Some are quite nervous when around me but I laugh them out of it and they don't push the issue so we continue having good times, a few have asked outright about some symptoms and I do admit them but they take it in stride and never treat me like I should be bubble wrapped . For the most part most of my issues are invisible so even if I sometimes have to take time outs no one questions it. The few who do know what all my issues are do worry and get nervous but that gets thrown to the wayside after a few minutes of our getting together.I find that just being myself helps people treat me as they always have. Some things were unavoidable , if the ambulance keeps picking you up neighbors are bound to ask questions, most of our neighbors knew some of my issues but they never acted differently, matter of fact they were very helpful especially with our kids. We moved to the country some yrs ago and of course even with distance between neighbors they do spot an ambulance but again no one ever treats me different.
Not long ago my doctor discussed a pacemaker, I don't think I could ever go for that. Thinking about it a pacemaker is the same as being kept alive by a machine, something I would never want--- time will tell I guess.
So Alysser, cheer up, your real friends won't treat you differently unless you dwell on your health. Those that choose to act differently might not be the kind of friends you need around you. Do I hate hospitals, you bet. But your health issues don't make you different or weaker than anyone else...
It's all in the way you think of yourself.

[Freedom]

I'm going to take a different tac, something no one else has mentioned.

Alysser, I didn't see you write about anything you can't / should not do. Do YOU admit there are some things you would be better leaving undone, untried? This will go a LONG way to convincing others you are informed, aware, and making intelligent decisions. All I read so far, is that basically if you want to do it you will, unless someone ELSE stops you. This means you either don't fully understand the situation, are in total denial, are extremely rebellious about the heart condition, or insane. And I happen to know you are NOT insane!

Read how many times you wrote that you have PROVEN THEM WRONG. Are you trying to convince THEM, or are you trying to convince YOURSELF that you are alright?

[Kirsten]

Oh wow, this is difficult, and I see (and think I really understand) your frustration, but reading your post, I have to admit I was beginning to wonder if Freedom wasn't right with what she said; that you're asking too much of you because you grew up overprotected (which is absolutely understandable from your parents' point of view), and because all you ever wanted is to live a "normal" life. And maybe your friends have become so protective now because they see you overdoing things...

I think the key (for everyone with a chonical illness) is acceptance. To accept that there are certain things you cannot (or at least shouldn't) do, but that apart from these things, your life is as normal as possible, and this is something the people around you should respect as well. Maybe they will stop caring too much about your medical condition if you are taking more care of yourself?

[Alysser]

Karen, that's a really sad story and it's truly heartbreaking. Did they know about it? Do you know what he had? I have never drank excessively and I never plan to. It's not cute, fun or cool to get drunk in my opinion. Drinking is fun once in awhile but people should not be ridiculous about it. I like the response too, thanks for that!

Thanks for the link, it made for an interesting read! I KNOW what my condition is, I was just pretty annoyed when I typed it, and I didn't know if I spelled it correctly. LOL, mrspunkysmom, maybe they jut thought you were a klutz? Or you could have used that as an excuse!

Pomtzu, Deborah is actually the place I went and still go to. I DO get yearly check-ups. Last year, when I turned 18 they gave me the choice of whether I wanted to go or not. Of course, that's only what they said, however I made the choice to go. I do go for that. I guess I should be grateful it's only once a year that I have to go, and not every other month or something. That is a really sad story about your nephew as well. Is that the same thing as what I have? I don't think the lesson of that story only applies to people with issues already, things like that surely can and do happen to everyone.

Cataholic, of course, I'm not a parent. My parents always like to mention that I "don't get it". And maybe I don't....actually no I really DON'T. But the fact is, they don't get what it's like growing up feeling like a freak either. I don't go around telling my friends...that is the last thing I want. I would say, maybe 5 or 6 of my friends know. Only BECAUSE, I am either really close to them (one who knows actually has a heart issue to), my parents have said something or they have seen me in a bikini - kinda hard to hide a scar that way. I guess, I could NOT wear one. But I like them.. I do know it by name, my current status since 1999 has been fine, and I've been going to the same doctors (my old one left for a better position, another did the same, and my current one is newer but very nice). I don't really appreciate being called an idiot. I would have mentioned that the doctor had warned my parents against that, and probably would never have went on, mostly because of my parents. Roller Coasters and other rides are something I've always had access to and was never restricted of. My doctors have said nothing about it or if they did, it's always been that it's fine if I go on it. Believe it or not, that's the truth. There is one ride at Disney my parents don't want me going on, the one where a few kids have died on with underlying unknown heart defects, although I don't know it by name and didn't like it when I did go on it. I went on before those kids died.

Catty, thanks for the links. Believe it or not, I've done some research. I do appreciate it though. I am glad I have some proof right from google to show my friend who doesn't seem to think I can work out. Yes, as said, I do go for yearlys. Honestly, I don't think my doctor COULD get better. The hospital I go to is one of the best in the country for cardiac problems. They get kids from all over the world coming for surgery. I also know, they accept and will work with any insurance which makes them very popular. The hospital is about and hour from me.

Asiel, glad to know some people "get it". I know I can never make my parents stop worrying. We are the same kind of person. As a kid, I was always outside. I tended to pick the hobbies and jobs (past & future ones) that weren't perfect for me. I'm sorry to hear about your problems though but I am glad to hear, you have lived a relatively normal life despite that. And you know what, you are right...I guess I really need to stop caring about what everyone else thinks or what everyone else views me as. I think I've proven myself well above "weak". and If others don't why should I care? That makes a lot of sense.

Sandie, there are plenty of things I wouldn't do because of my heart condition, but would never have done anyway - let's see: Smoking of ANYTHING, Getting black-out drunk, sky-diving, bungee jumping, go into outerspace (despite my old dream of wanting to be an astronaut, and my nerd dream of joining Starfleet )...uh can't think of anything else off the top of my head I'm sure there's a several more things though! In all honestly, I have proven to myself I AM fine and have very minimal limitations. I am trying to convince them, though that's hardly working.

Kirsten, I really don't think I've been over-doing it, ever, and I don't think my parents thought I was. If my mom truly wanted me to not go on a six mile hike, I wouldn't have because I wouldn't have heard the end of it. I told her multiple times how long it was. She only said it after I told her about the trail. I truthfully think my mom and some of my friends are paranoid about certain things. It took me a long time to accept the fact that I had this heart issue, but I finally did. That was when I started trying to prove people wrong even more.

I guess overall, what I am saying is, I get my parents have every right to worry. Maybe even my friends do sometimes, but I think I've shown them what I am capable of doing before and for a long time. I feel that I've been responsible enough, care enough about my well-being, etc. I don't do things they disapprove of very often, I always tell my parents what I am doing before I do it, etc. What I expect from them is just the knowledge that I am not a stupid person. I don't want to die, I DO have self-preservation. But I also want to be me. I want to be able to do the things I love without them getting mad, worried or at least without them expressing this worry to me. I want to be able to hike, bike, work-out and just LIVE without them being paranoid. I grew up sick of doctors telling me what I couldn't or shouldn't do. I did some of them, and maybe I shouldn't have, but the fact is, I've proven myself. I just want to live life the way I've always wanted to, without people worrying/nagging/commenting/whatever you want to call it. All I ask is that I am not treated as an invalid, which I don't think is TOO much to ask.

Woah that was long. Sorry.

[Catty1]

Well goody! I'm glad to hear you don't need a new pulmonary valve - that would be a pain! That's probably because the surgery was done when you were a bit older.

[Karen]

Karen, that's a really sad story and it's truly heartbreaking. Did they know about it? Do you know what he had?

I have forgotten, frankly. His parents and family knew he had a heart condition, and he was not expected to live when he was a baby. But Christopher so wanted to be a "normal" boy and play and run with the other kids ... it was truly tragic. This was many years before you were born, of course, and they know an awful lot more now than they did 35 years ago about the human heart.

Glad you have a sensible attitude about drinking. Also, never ever leave any drink of yours unattended if you are at a bar or a party or any gathering, if you leave the table take it with you, just to be safe. Tell your friends the same thing.

[Cataholic]

Cataholic, of course, I'm not a parent. My parents always like to mention that I "don't get it". And maybe I don't....actually no I really DON'T. But the fact is, they don't get what it's like growing up feeling like a freak either. I don't go around telling my friends...that is the last thing I want. I would say, maybe 5 or 6 of my friends know. Only BECAUSE, I am either really close to them (one who knows actually has a heart issue to), my parents have said something or they have seen me in a bikini - kinda hard to hide a scar that way. I guess, I could NOT wear one. But I like them.. I do know it by name, my current status since 1999 has been fine, and I've been going to the same doctors (my old one left for a better position, another did the same, and my current one is newer but very nice). I don't really appreciate being called an idiot. I would have mentioned that the doctor had warned my parents against that, and probably would never have went on, mostly because of my parents. Roller Coasters and other rides are something I've always had access to and was never restricted of. My doctors have said nothing about it or if they did, it's always been that it's fine if I go on it. Believe it or not, that's the truth. There is one ride at Disney my parents don't want me going on, the one where a few kids have died on with underlying unknown heart defects, although I don't know it by name and didn't like it when I did go on it. I went on before those kids died.

I should have said, "idiotic behaviour"!!! I didn't mean it like, "man, you are a stupid fool". I meant it like, "man, that is some RISKY behaviour"...sorry!

But, overall, after your last novel, I can see that you DO know a lot more about your condition than it sounded in your first post. And, there is NOTHING wrong with wearing a bikini (unless you are me) with a scar. To me, wear it loud, wear it proud. It does tell a story about you. Not a shameful one...but a strong one.

As for drinking, everything in moderation, including moderation. I drink, always have and always will. I really enjoy a glass of wine, and a beer on a hot day (not together, though). I think abstention leads to more problems than not. Not everyone that drinks gets drunk. Not everyone that drinks falls down. Not everyone that drinks only has a good time when drinking.