The Reason Why I Hate Being Sick - I Wish It Was Simple

When I was younger, around elementary school age, I hated having a heart condition and a lung disease. 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 kick ball 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 it terrifies me. 

Hope and Love,

What are the reasons you hate having a chronic or terminal illness?
What are the reasons why you hate that your child has a chronic or terminal illness? 


  1. Hi!
    You don't know how happy I am to have found your blog! I was just looking through random things about GUCH or CHD and I found a link.
    I'm an Italian girl (so sorry for my English!) with a congenital heart disease. I had 5 operations and now I'm ok. I've never had the chance to speak with another GUCH my age (I'm 21), so I've always felt very alone.
    It helps me a lot to read about someone who has gone through the same things I have.

    When I was diagnosed the doctors told my mother to have an abortion, because they believed my CHD didn't have a cure. My parents didn't give up on me, and they found the only Italian cardiologist who at the time was specialized in congenital defects. I had my first operation right after I was born, and another one shortly after.

    I really love my parents for that. They gave me the chance to live =)

    I had 3 other operations and 5 cateterization. The doctors where ok, but I had awful experiences with nurses, expecially in the latest recovery. They assumed that because I was the one of the oldest patient I didn't had any right to be scared or sad, that I had to stay silent and don't ask anything about what was going on, because they got enough pain and sadness from the younger ones. Needless to say, I was terrified.
    As a result, I'm still very anxious about any medical procedure that I have to do, being a MRI or a simple visit. This is somehing I really hate and I'm working on to change.

    When I was a kid, I hated that I couldn't run, play or even do a flight of stairs like the others. I was envious and resentful of others kids. Growing up, I realized it was useless and stupid, because the hate was poisoning me.

    I'm also a very socially awkward person. I think this is a result of being bullied, my own shy nature and the distorted idea I had about my illness. There weren't any psichologists in the hospitals where I was ricovered, and my mother thought it would be a sign of her 'incompetence' to ask for help for me or for my family.
    This is perhaps the thing that I hate more about my illness, other than my fear of dying: how badly it effects my loved ones.

    I'm also worried about my future work: in Italy there's a lot of ignorance concerning chronic illness, expecially CHD.

    All in all, I am a very lucky person. I have a loving, if not perfect, family. I thank everyday God for the wonderful friends that I have. And despite everything I can go to University. I'm studying Medicine :D

    In Italy there aren't things as health insurances. Health care is free, so I can't really imagine what you are going through. I'll pray for you and for your family!

    Thanks again for your wonderful blog,


  2. Hi!

    WOW, all the way in Italy?! That is so cool! I have question what GUCH mean? Or is that the same as CHD but a different way of saying it?

    I am so glad that your mom decided to keep you and helped find doctors to save your life. My birth parents knew that they could not take care of me, so they put me up for adoption. My mom and dad have fought so hard to get me where I am today. Searched the whole country, one point we even traveled once a year to New York (which is a 6 hour plan flight from where I live) just to see a doctor so I could live. I know what you feel like when it comes to our parents. Without them, neither of us would be here right now.

    As for your experiences with nurses, I've had that happen too! And you know what, I tell them that I DO have the right to be scared. I want you to know that you have every right to be scared, worried and even cry. I've had nurses tell me not to cry or that I needed to stop being so scared. But I don't because they have no idea what we go through. I tell them, "This hospital is your job. You get to go home at the end of the day. You don't get needles poked at you every day. You can leave this building when the day is done. You get to see your family, your friends and have a home cooked meal at the end of the day. I don't. I am fighting for my life and I miss my home. So I am allowed to cry, I am allowed to be scared. Because this is my life and I am fighting for it."
    I completely understand about you being nervous or scared for even simple procedures or doctor appointments. I have a doctor appointment tomorrow, and even though I feel great, I am scared. I am scared of what they might tell me. I am scared that the test results will show something terrible. That is what I'm scared of.

    I still can't walk up a flight of stairs, so I completely understand how you felt. I at one point was bullied as well because of my CHD. Some girls at a party when I was 13 years old locked me in a closet for about two hours. They refused to let me out to use the restroom or to take my medication. I myself went to counseling and I found that it helped so much. I learned how to cope and deal with having CHD.

    I myself worry about work as well. Who will want to hire me? I miss a lot of school because I get sick so easily and because the sickness makes my heart and lungs tired as well. So if I miss a lot of work, they could fire me, what would I do then?

    I think you are a very lucky person and you sound like an amazing person! Do you know what you might want to be after you graduate from the University? I'm going to college as well, I am getting my minor in psychology and my major in counseling. I want to be a counselor, and help kids like us deal with having an illness.

    I will be praying for you and your family as well! I hope we can keep in touch!

    Hope and Love,


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My Life As A Chronically
Ill Young Adult
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