Having An Invisible Illness Makes People Think I'm A Scammer

The other day, my sister and I went to the mall so she could buy some new shoes. I pulled into a handicap parking spot and saw that there was a young couple in the spot next to us - one that was no a handicap parking spot. I chuckled and told my sister, "How much you wanna bet they think I shouldn't be parking here?" She climbed out of the car and I reached over to open my glove compartment where I keep my placard. 

Just as I finished putting the placard up, the man rolled down his window and yelled out at my sister who was outside the car by now, "Scammers!" He had a smile on his face and he most likely expected my sister and I to laugh and confess that we borrowed my grandma's handicap placard. I was working on getting out of the car when my sister corrected him with, "Actually, she does need it. She has a congenital heart defect." The women beside the man said something along the lines of: "Oh, we take that back then." And the man mumbled an agreement. 

I posted this story on Facebook and sadly, several heart moms who have had rude comments about parking in a handicap parking spot when their child looks so healthy. My sister, I hope, taught this couple that you can't look at someone and be able to tell if they are sick or handicapped or not.Looking at me, you'd never know that I've had 4 open heart surgueries, have a pacemaker/ICD, take 45 pills a day, sleep with oxygen at night and some day need a heart-lung transplant. But this man assumed that just because I look healthy - I must be. Big mistake and it made him look ( and probably feel as well) stupid for his comments. 

 My sister had the idea that I should make a small business card that explains my condition and gives them a site to find out more about my illness; so when people make comments about how I shouldn't be parking in a handicap parking spot or even give me a certain look (which they do quite a lot!), I can politely hand them a card to help remind them that there are illnesses that you can't see. Just because I don't look handicap doesn't mean I'm not. 

So please, before you yell at someone that they are a scammer for parking in a handicap parking spot or even making a comment about how someone is lazy for using the elevator (which has happened to me as well in high school!), remember that they could have an invisible illness. And if anyone ever makes rude comments concerning the fact that, "you don't look handicapped enough to be parking there." or something along those lines - feel free to politely explain to them what your health issues are. 

Hope and Love,

Becca 

Share Your Story!

Dear Readers, 

I am on the e-mail list for Photobucket which is an online free photo editing site where you can upload your pictures, edit them and share them with others. Its an amazing site and I have found some amazing photos that are beautiful on there. Although I myself am not a very good photographer and don't really have the patience to get any better - I thought some of you might like to share your story through photos on this site. 

Photobucket is holding a Stories Contest called 'Life is an Adventure' and the winner will get $25,000! There is no limit to how many stories you can enter - but each story should be different as should the pictures. I thought that through this contest we could help share our stories of survival, triumph and hope. Help spread awareness about CHD, PH or any other illness you feel strongly about.

If you want some more information, go here. Please note though - all photos must be your own!

If you aren't a good photgrapher (like myself!) feel free to comment below though and share your stories of adventure, survival and hope!

Hope and Love,
Becca

30 Things to Know about my Invisible Illness

My mom sent me a link to a website where they asked people to fill out this questionnaire about their invisible/chronic illness for invisible disability awareness month. Here is mine. 

1. The illness I live with is: Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension

2. I was diagnosed with it in the year: 1992

3. But I had symptoms since: 1992

4. The biggest adjustment I’ve had to make is: My low salt diet, no caffeine and no roller coasters

5. Most people assume: Just because I look healthy, that means I am.

6. The hardest part about mornings are: Having enough energy to actually get out of bed.

7. My favorite medical TV show is: ER, before it went off the air.

8. A gadget I couldn’t live without is: My pacemaker/defibrillator and oxygen tank

9. The hardest part about nights are: I lay awake, worried about my future

10. Each day I take __ pills & vitamins. 45

11. Regarding alternative treatments I: In my case, they don't work and are impractical.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. While having a visible illness may make people be more understanding since they can see it, I would rather them assume I'm like any one else and treat me as a normal person.

13. Regarding working and career: I worry about if anyone will hire me because of how much insurance will cost. I wanted to be a nurse for as long as I was little, but I know now that it is too physically demanding for me.

14. People would be surprised to know: I need a heart and lung transplant and I am not allowed to have biological kids.

15. The hardest thing to accept about my new reality has been: It's not a new reality for me since I've been living with this my whole life. But I've never gotten over the fear of dying. 

16. Something I never thought I could do with my illness that I did was: Graduate high school

17. The commercials about my illness: This question makes no sense 

18. Something I really miss doing since I was diagnosed is: I have never been able to breath like a normal person. I'd love to know how that feels.

19. It was really hard to have to give up: Roller coasters and salt. 

20. A new hobby I have taken up since my diagnosis is: Sign Language 

21. If I could have one day of feeling normal again I would: Go on a roller coaster, eat KFC, have Mountain Dew and go skydiving. 

22. My illness has taught me: Never give up and miracles do happen. 

23. Want to know a secret? One thing people say that gets under my skin is: "You look healthy." 

24. But I love it when people: Take the time to really understand what I'm going through. 

25. My favorite motto, scripture, quote that gets me through tough times is: "Be kinder than necessary, for everyone you meet is facing some type of battle." 

26. When someone is diagnosed I’d like to tell them: Just hang on, it does get better and it doesn't mean your life is over. 

27. Something that has surprised me about living with an illness is: I am not alone. I used to think I was, but I know now that I'm not. 

 

28. The nicest thing someone did for me when I wasn’t feeling well was: Just listen to me complain and be there for me, supporting me. 

29. I’m involved with Invisible Illness Week because: I know first hand what it feels like for people to think you're faking it or think you are healthy just because of how you look. I want people to become more aware that you really can't judge a book by its cover. 

30. The fact that you read this list makes me feel: Like there is hope that people will start to be more understanding and aware.