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.


  1. I love this post!! Thank you so much for sharing! You are loved!

  2. Hi I'm reading your blog for the first time, but I think I'll be sticking around for awhile. I also got sick when I was somewhat young (21). I know that those that got sick in their teens or younger suffer a unique plight and that those of us that experienced a normal youth should never take that for granted. Thanks for being brave enough to share your story with the world.

    With that said, #12 really hit close to home for me. I've heard a lot of fellow patients say they'd prefer a visible to an invisible illness, mostly because of recognition by society & the medical system. As someone with a very invisible illness, I have often felt the same. However, what you said about others assuming you're normal also resonated with me. I feel like I can manage impressions that people have of me. I don't have to assume that whenever someone looks at me, a slew of reactions like "sympathetic" and "weird" come between us. In other words, being able to fake it can be empowering, something I haven't heard someone else in the chronic illness community say. Like we are the masters of our own destiny, at least in the moment when people are judging us.

    Even though many of my friends don't question my illness, it's been 6-7 years now and they still don't really get it. By now I don't expect them to. In fact, I long for the day when I can use my illness as a launching pad to make a real dent in this world and blow my friends away within their imagination of success.. Call it my form of revenge if you will.

    I look forward to reading more insightful gems from you.

  3. I just have to add that a big greasy bucket of KFC would also make it to my bucket list :)

  4. Hi Joey,

    I wanted to thank you for your wonderful note, I always love hearing from other chronically ill patients!

    I noticed the same thing you did, about most poeple wanting a visible illness. Both arguments make sense to me, so I can see why many people would say visible. But I like what you said about us having a bit of control over our destiny when it comes to how people see us. If we let them know they can treat us like everyone else, they will.

    There are so many things about my illness that my friends don't get. "Why can't you just get a job for health insurance?" Is a big question I always get but they don't get that no one wants to hire me because of how expensive the insurance would be. But thankfully, they are there for me and support me.

    And I know what you mean, about wanting to make a dent in the world using your chronic illness. I hope to do the same thing. Not really to blow my friends away, but to just give hope to others like me. Maybe some where down the road, other chronically ill people will look at what I've accomplished in my life and realize that they can too. That just because we are sick doesn't mean we can't make an impact on the world.

    Thank you so much for reading, I really appreciate it.

    Hope and Love,

  5. Hi Becca,

    I just wanna say that I can hardly believe you're only 19. You are definitely wise beyond your years. From your response, i have little doubt that you will indeed be a mover & shaker in the health [advocacy, blogging, wherever you end being] world.

    It's really funny how many intelligent people have no clue when it comes to "disability economics." I'm pretty sure the company I worked for out of college hates me to this day because they had to pay me disability after I was only there for less than a year.

    Unfortunately that means we have to carve out opportunities for ourselves & often do contracting work or be our own employers. Fortunately, this is a route that allows us to flexibility with hours that don't cause relapses.

    Anyway I look forward to reading more of your blog. Keep up the awesome work.

    Your new fan,

  6. Hi Joey,

    It amazes me too how very little people know about how being chronically and/or terminally ill can effect all aspects of your life. A lot of people see me smiling and laughing at school, and they figure I can do anything. But they don't see the side of me that takes 45 pills a day, sleep with oxygen at night and get out of breath when just walking up a flight of stairs. They don't get that some days are better than others when it comes to my illness and they don't realize just how expensive keeping me alive is. They are used to going to the doctor once a year while I go every 3 months. They think getting sick means getting a cold and having a prescription for some allergy medication. They don't think about needing to get approval from a health insurance company or having to deal with being denied health insurance because your medication is too expensive. It's frustrating and sometimes, its disheartening. But I am committed to spreading awareness that way more people will realize, this isn't just some flu like thing that once I get better its gone. This is going to live with me my whole life.

    That is true. Sadly though, if I were to be my own employer, I'm still not sure I'd be able to get the health insurance I need without having my premiums sky rocket. As of right now, I am on my state's medical insurance but once I turn 21, I will have to put on my dad's. My dad owns a small engineering firm and I worry that because of my health insurance costs, his insurance premiums will sky rocket and he will end up going bankrupt... all because of me. I hope that once I graduate from college with my Psychology degree I will be able to get a job working as a child psychologist with a hospital; that way I can get good health insurance. But what happens when I get sick for weeks on end and can't make it to work? I can't afford to get fired from a job. I can't afford to miss work but I have no control over it. Because of my heart and lungs, when I get a simple cold it turns into something horrific that makes me miss weeks. My senior year I missed 70+ days of school. If I do that at my job, there is no way I'd be able to keep it.

    I didn't mean to vent to you. But these things... they have been weighing on my mind for the longest time and it scares me, and I knew you would understand. As an adult, I have to start thinking about my future... and the whole topic of medical insurance scares me.

    Thank you so much,

  7. thank you very much for your blog, it has helped me a lot, I also suffer pulmonary hypertension I have 18 years and have helped me in difficult times.

    Thanks Becca.

    Colombia'm far from a country in South America, forgive my English, I would love that will publish something in Spanish!

    gracias desde Colombia

    ATT, Claudia.

  8. Hi Claudia!

    Thank you so much reading my blog, it really means a lot to me! I am so glad that my writing has been able to help you through what you have gone through. Helping others get through their own difficult times by writing about mine has been the goal from the very start of this blog and I am so glad to see that it is working!

    Wow, you are all the way in Columbia! Its amazing how the internet can connect me, a girl from Phoenix Arizona all the way to you in South America! If you ever need something translated, there are websites where you copy and paste what I have written into a box and it will come up in your own language. Here in America it is: http://translate.google.com/ Maybe this will help!

    Thanks so much for reading!

  9. If you become unable to work due to a chronic illness while pursuing your career, I recommend:
    1. Hire an attorney that is well versed in ERISA laws as well as the ADA. Research the questions you need to ask to find an attorney with EXPERIENCE with handling insurance companies and YOUR EXACT disability.
    2. Use your benefits, you pay for then every week/bi-weekly via your deductions on your paycheck (take a closer look at the amounts deducted from your gross).
    3. You may reach a point in your career when you push your body so hard and still cannot get enough work done to stay ahead or even on target; my doctor told me 'if you keep on like this, either your job will let you go (I was working 10-15 hrs per day plus 8+ hours on the weekend to barely get the work done) or your body will break'. Well, 4 days later my body broke. A few surgeries, a visiting nurse, etc. and facing the possibility if never being able to work again, not being able to marry, have kids, sell my house, and move back home. The point is, chronic illness is about you and those that are affected. If there is the opportunity, make sure you have the option to go on long term disability (you will exhaust your short term disability first) and in parallel to long term disability, apply for social security benefits. This previous statement can really save you if you have a good Disability Attorney. The best way to find a good disability attorney is to contact the chair of any local or surrounding support groups. They'll know who to go to.
    4. Read '7 Essential Habits of Effective People'. You may gain great benefit when you have to swallow those thorny pills like losing your personal independence, losing/changing your career, using your ability to work altogether, working through the anger, frustration, grief, and all the emotions you once may have buried through a good run or burying yourself in work.
    5. You must find a way to deal with the emotions that come with chronic illness; the loss if the person you once were and the possibility of acceptance of your 'new normal'. Bearing yourself up for not being the person you were is like beating a dead horse....only the horse becomes you.
    6. Change is hard for everyone. It's so hard to say be resilient when it looks like the life you love and worked so hard for seems to be crumbling before your eyes and friends drift as you can no longer physically visit them; BUT it is a TRANSITION.
    7. We always say we never have time when we're working our tails off.....you have time now to become the person (not a definition of social stigma; remember, emotional dependence is when you rely in others' opinions if you to rule your opinion of you, emotional independence is where you graduate to find your own value within yourself without the validation of others, you graduate again when you reach emotional interdependence - the ability to value yourself while valuing others in an emotionally equal fashion. It's the hardest to achieve but reaching this point of growth allows you to live without the sadness, envy, jealousy, hurt that you feel as you see others progress.
    Trust me, I hate being in the clinics where only the sickest of sickest sit beside me during my only social occasions which take place in the hospitals with my doctors. I feel the anger, frustration, anxiety, hopelessness, but I have vowed to work on tools to help me swallow those 'jagged pills' with a little less hardship each time.


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My Life As A Chronically
Ill Young Adult
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