Living with a health condition

[Dayvid]

I was just wondering what its like for other people out there that live with some sort of serious health condition that they have no control over.
here is my story:
I was born with a 'bad heart' and i am always in and out of hospital. it can get hard on my family and me. I dont see myself as being any different. even though I cant go on school camps, i constantly being watch by my teachers and guardians and people feel sorry for me. I dont want them to feel sorry for me! they didnt do anything and i am quite happy to be honest.

whats your expirences with health conditions? how do you deal with them?

[Kaleidoscope Eyes]

I don't have a condition like this myself, but my sister did. She had Noonan's Syndrome, which included a heart condition like yours. For her, the problem was that the muscle in the left ventricle was too thick, running the risk of misinterpreting/missing the electrical signals from the brain that regulate the heartbeat. She had limitations just like you, and I know it was hard for her sometimes to feel like she couldn't just be treated like everyone else. My family was good about that, but there were always people who didn't understand so well. I remember how frustrated she'd get when people would seem to forget that she was really just like everyone else on the inside, even if her body was different.

I do have a mental condition myself, and can understand being treated as somewhat fragile. I also understand having others blow tiny things out of proportion and trying too hard be sympathetic (actually treating me like I'm broken or something). My best advice is to tell them how you feel. Let them know that yes, you have a heart condition, but no, they don't need to worry about you so much. You know your limitations, you know how to handle yourself, so unless there's a real problem they need to just look at you like anyone else. You're not broken, and they don't have to "fix" you. :)

[Dayvid]

My passion is running and lately my coach has tried to talk me out of this and just to focus on my diving but I love running! just because its a cardio exercise, it doesnt mean it doing me any more damage.. in fact quiet the opposite! there is a stigma that comes with any condition and i would love to find away around this but i just dont see it happening in my lifetime!

oh and my heart condition isnt clearly diagnosed but to put it bluntly... My heart is fighting itself. I am truly the only one that understands what I can and cant do. i admit i do push myself to the edge but i have never crossed it.

[byee]

Hi Dayvy!

Yeah, people often don't really know how to respond to people with health conditions. This typically comes from a lack of understanding about the condition, although it feels more personal. Maybe those people who you inform should also be told (and reassured) about it, so you can manage their reaction.

I'm a runner, too, and i know how you feel about it. If I don't get out there and run, I get cranky, I wouldnlt do well at all with someone denying me this pleasure!

[Dragonite]

i was born with a heart murmur im not sure if it has gone away yet if it hasn't i need to get surgery. my mom wont let me do anything active, but thats ok sence its hard for me to gain weight but i feel fine i cant remember the last time my mom took me to the doctor to get a something i forgot what is called i'm supposed to have one every 5 years but its almost time to get one again i hope it went away.

[Skeln]

Well, I used to have asthema. I still do, but no where near as bad. Just let others know how you feel and that they need not worry for you. It's nice to know that you push yourself, but don't overdo it. You may think you can go on, but really that ust might be a mental illusion. Usually people with conditions think they can keep on going when they can't, and it's always good to hear other people's opinions.

As you you xxyaxe, I hope you're all better now! When I learned my asthema was nearly gone I was so overwhelmed with joy and I hope you get to feel that same feeling that I did. To me it was like going through 10 awesome birthdays all at once.

[Dayvid]

Thank you all for your support.

Just an update: i went to hospital last week with a severe attack! but I am getting better already! but now I have to go down to the hospital in a few days to see weather surgery is on the cards... I dont want to go down this path as there is a risk of stroke and even dying! I value my life way to much even with my heart condition to be taking that risk! if I have lived this long with it.. whats to stop me pulling off another 16 years? im willing to take my chances.

[NeverTooLate]

Thank you all for your support.

Just an update: i went to hospital last week with a severe attack! but I am getting better already! but now I have to go down to the hospital in a few days to see weather surgery is on the cards... I dont want to go down this path as there is a risk of stroke and even dying! I value my life way to much even with my heart condition to be taking that risk! if I have lived this long with it.. whats to stop me pulling off another 16 years? im willing to take my chances.

hope u make it baby:)

[Dayvid]

I havent been on these forums in ages but just thought i would call back and tell you that that I did go through with the surgery and it didnt make me any better.. but i guess the good news is it didnt make it worse either. so i will have more surgery next month.. hopefully they fix it this time.. oh and with my running... I won the state finals last month! I am officially the fastest kid in the state in my age group! yeah yeah!!! always good to end on a positive note.

[Kaleidoscope Eyes]

Good luck with the surgery next month, let us know how it turns out. :) And congrats on the state finals! That must feel amazing, considering the amount of kids who compete overall each season.