30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: cough variant asthma, chronic hypertension, chronic anxiety, and PTSD (from Katie’s delivery)
2. I was diagnosed with it in the year: 2002 with the first three, the last was late 2008
3. But I had symptoms since: childhood for the asthma. Since college for the anxiety
4. The biggest adjustment I’ve had to make is: shifting from teaching in person to teaching online.
5. Most people assume: that I can do anything and everything because Jerome Bettis played football and Jackie Joyner-Kersee was an amazing athlete.
6. The hardest part about mornings are: remembering to take my medications with the hustle of children and dogs.
7. My favorite medical TV show is: Diagnosis, Murder.
8. A gadget I couldn’t live without is: my nebulizer
9. The hardest part about nights are: getting to sleep. I’m always afraid of waking up in the throes of an asthma attack. It’s the scariest feeling.
10. Each day I take _16_ as needed pills & vitamins. (No comments, please) plus two puffs of advair and albuterol as needed.
11. Regarding alternative treatments I: have not really found any that are viable for me.
12. If I had to choose between an invisible illness or visible I would choose: I don’t think I would change for something more visible. I just wish I could make people understand that there are things you just shouldn’t do around me
13. Regarding working and career: I miss the fact that I don’t see my students in person. I miss teaching books that I love. I miss going to conferences. I haven’t been since Colorado Springs. I spent the whole thing wandering around wheezing.
14. People would be surprised to know: how much I hate leaving my house and being exposed to triggers. I have my asthma under good control as long as I don’t have a lot of exposure.
15. The hardest thing to accept about my new reality has been: how hard it is to do things that I consider normal. I can’t even weed my garden because it stirs up too much pollen and makes it impossibly hard to breathe.
16. Something I never thought I could do with my illness that I did was: travel to a school graduation last year. The last time I did extended travel, I got really sick, so I was worried that this, with all the people in enclosed spaces, was going to do a lot of damage, but it didn’t.
17. The commercials about my illness: make me sad. I can’t do anything and everything and the commercials make it hard for people to understand that.
18. Something I really miss doing since I was diagnosed is: being spontaneous. Everything has to be planned and organized. I have to remember medication whenever I go anywhere.
19. It was really hard to have to give up: being places like church. The enclosed space, lots of people thing is like a breeding ground for illness for me.
20. A new hobby I have taken up since my diagnosis is: I started knitting. It helps me calm down and keep track of my breathing. Particularly good for the anxiety portion of the program.
21. If I could have one day of feeling normal again I would: go to the movies. I haven’t been able to sit in a movie theatre in years. I start wheezing and I have to leave.
22. My illness has taught me: that patience is important. I might not be having a good breathing day today, but tomorrow might be better. I might not be be so stressed or so easily triggered.
23. Want to know a secret? One thing people say that gets under my skin is: You don’t really have asthma. Or, my other favorite, you use asthma as an excuse not to do things.
24. But I love it when people: are considerate and remember that things like perfume trigger me.
25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming. (Dory from Finding Nemo.
26. When someone is diagnosed I’d like to tell them: It’s not the end of the world, but it will change your world and the way that you view it.
27. Something that has surprised me about living with an illness is: how much my perspective changed. I always thought that I was good at empathy, but I’ve discovered I wasn’t nearly as good at it as I thought I was.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring things for the baby. After the delivery, I couldn’t do anything and the people who helped in that first two week period really made things so much better. They honestly have no idea how much.
29. I’m involved with Invisible Illness Week because: I don’t look sick when you look at me, but my body knows differently. I want people to know that you just don’t know who might have what by looking at them.
30. The fact that you read this list makes me feel: like you care. Thanks for taking the time :).

8 thoughts on “30 Things About My Invisible Illness You May Not Know

  1. “Most people assume: that I can do anything and everything because Jerome Bettis played football and Jackie Joyner-Kersee was an amazing athlete.’

    Of course, the old ANYONE can do ANYTHING meme. Because we all have the same opportunities and capabilities, and life-changing physical damage is ALWAYS visible (and the often heartless corrolary assumption that all all emotional damage can be “healed’ or can only hurt “if you let it”)

    *sigh*

    I am really happy that I e-know you.

    • Oh, you have so hit the nail on the head. A person in my life believes that if I just “choose” differently then everything would be fine and I would be healthy and all of these things wouldn’t bother me and so on and so on. She has very strong feelings about how I do things and it does get very frustrating sometimes.

  2. I never even knew there was an invisible illness week

    I”ve had asthma since i was 2 (and dinosaurs were walking the earth back then).. i hate it when people say it is an excuse, great, trade lungs and get back to me

    a great piece of wisdom I learned from a knitting buddy (knitting also holds a great piece of me together) I am a “person with asthma” not “an astmatic”… semantic difference, HUGE difference in approach.. I am not an asthma sufferer, just a person with asthma…

    when i got thyroid cancer, i wasn’t a cancer patient, from day ONE i view myself as either cancer survivor or person with cancer, certainly not a sufferer….

    you know what, jackie joyner-kersee can jump over my slow old fat butt anytime… i may be a person with asthma but don’t compare me to world class athletes (world class programmers, world class pundits, there you go) but world class athletes, no go

    barb

  3. Great post. Chronic illness isn’t much understood in our culture.

    PTSD really makes things hard. After our tornado and my own illness, I’ve never had the same footing emotionally. It’s troubling (and lonely).

    • It really isn’t, and I think that people tend to mistakenly assume that once the initial crisis with a chronic diagnosis has passed that the person can just go back to being the person that they were. Or, with PTSD that you “get over it.” I don’t believe that it’s a choice to be affected and I don’t believe it’s a choice that some things trigger strong reactions. It’s just the way that it is.

  4. I’ve had asthma for the last 17 years. I’ve had the same bull crap said to me, that I use it as an excuse. It’s easy for someone to say that when they’ve never had to struggle just to breathe.

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