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My Evolving Reasons for Hating CHD

Jan 15

Posted by: ACHA
1/15/2013 8:38 AM  RssIcon

By Becca Atherton

When I was younger, around elementary school age, I hated having a heart condition and a lung disease (pulmonary hypertension, or PH). I hated it because I couldn't run or keep up with the other kids at recess. I hated it because during recess, I wasn't able to play kickball or basketball.

Then I got a bit older, into the pre-teen stage, and I hated having a heart condition and a lung disease for a different reason. I hated how my scar looked. I hated the stares I would get. I felt ugly. I felt like I wasn't girly enough or feminine enough because of the scar in the middle of my chest. I felt like no guy would ever find me attractive because of the big pink scar. I hated having CHD and PH because of the scars.

Then I got a little older, and I was able to realize that my scar didn't make me ugly nor was my scar ugly. But I started to hate having CHD and PH for a different reason. No more roller coasters, and a low-salt diet. I was so angry at my doctor. I blamed him for taking those things away from me. Still to this day, I go to a theme park or a carnival and there is a pang of sadness when I see other people screaming their heads off on a roller coaster and I keep thinking “Someday... someday when I get my transplant, I'll be able to do that again.”

But I have grown up since then and I no longer hate having CHD and PH for those reasons. Now my reasoning for hating having CHD and PH are more realistic, mature and very scary. Insurance. I hate having CHD and PH because of the battle with the insurance company to get my doctor visits approved. I hate having CHD and PH because of all the work my mom and dad have to do just to get the insurance company to approve one doctor visit. I hate having these illnesses because I worry what it might do to my dad's small business if he decides to put me on his own insurance plan.

There are times when I miss the old reasons why I hated being sick. Looking back now, they were so much simpler and less daunting than insurance. There is a part of me that wishes I was not an adult and instead a kid once more, so I wouldn't have to worry or even be aware of the insurance problems. But I'm an adult now and I am aware of the insurance problems, and they terrify me.

Becca Atherton was born with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension. She was adopted as a baby into a large multiracial family, where she is the second youngest. Becca was given a 13% chance of surviving to the age of five, but she is 20 years old and a college sophomore at her local community college. She loves to read, perform American Sign Language to music and write on her blog.

Copyright ©2013 ACHA

Location: Blogs Parent Separator ACHA Blog

3 comment(s) so far...


Re: My Evolving Reasons for Hating CHD

Becca, I hate that you have to worry about insurance and that insurance is even a issue. Your article was very well written and I was quite interested to find that the feelings you've had about your CHD & PH were the same as what my daughter had during those times in her life too. Thank you for allowing me to peek into your life as an ACHDer.

By the way, I met you when you were a little girl when I went to a CHD Awareness carnival in Phoenix. I know your mom from online CHD support groups. You are so amazing and have been through so much. You bring hope to so many of the parents who have young children with CHD & PH.

I hope and pray that your health will improve and that your insurance company will start playing nice. Love and prayers, Nancy

By Nancy Jensen on   1/16/2013 10:45 PM

Re: My Evolving Reasons for Hating CHD

I am lucky that I havent had many insurance problems so I should consider myself lucky.
I must admit it was nice to hear that someone else felt the way I did as a kid. Please dont take that in the wrong way - its just nice to know that you are not alone. I always felt so ugly and wanted to wear clothes that wouldnt show my chest scar. But over the years (I just turned 27) I have come to wear it as a badge of honor if you will. I dont feel embarrassed by it anymore. I survived something. I think it brings some awareness to the public. And I think its great that you are expressing yourself on this site because that also brings awareness.
I was born in heart failure, they thought I was going to die from my defect, I had my heart surgery at 5 but when I had a vasospasm heart attack at age 22 no doctor at the ER thought someone so young could have one... so I had to wait until my doctor got there almost an hour later to even get an aspirin. Things like that shouldnt happen. We need to spread awareness. Heart issues arent something that only the old have.

By Hilary Ennis on   1/17/2013 11:31 AM

Re: My Evolving Reasons for Hating CHD

Becca, your story brought me to tears. Because I know exactly how you feel. I was born with pulmonary atresia. I have had 6 open heart surgeries and in 2010 I received a pacemaker that constantly has to be watched.
As a child I had the exact same problems I thought no one liked me because of my scars. I also have large scars down both of my legs on all 4 sides of my legs because as a baby I lost all the circulation to my legs and the doctors told my mom if they didn't do the operation I wouldn't survive. And if they did do it I would either walk or be paralyzed from the waist down. What's a mother to do? Put on the spot like that? My mother made the best decision and I can walk and the procedure saved my life. I know how we feel because we are on the other side but we will never understand how our parents feel, and they'll never understand how we feel. It's a terrifying thing to go through. You'll always hate your sickness I feel anyway. Because there will always be something you can't do that others can but that's what ultimately has to be the thing to make us stronger in the end. The thing I hate about my heart problem now that I'm 21 live on my own and have a wonderful boyfriend is that I may never be able to have children of my own. I'd love to keep in contact and learn more about you and things you've went through and share with you things I've been through. Hopefully we can help each other.

By Kayla on   1/29/2013 9:11 AM

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