In Honor of Invisible Chronic Illness Awareness Week...that's a mouthful. This is my attempt at educating my followers about my invisible chronic illness, because the more you know the more you can help anyone around you who might have an illness you aren't even aware of, because about 96% of illnesses are invisible: meaning people who have them show no visible signs.
My Chronic Invisible Illness Awareness Survey!
AKA, 30 Things About my Invisible Illness You May Not Know
|Me and my favorite fellow Sober Sally, Tali, doing our best sorority girl leannn|
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
About 5th grade? So 2002.
4. The biggest adjustment I’ve had to make is:
Knowing my limits without being limited. A common side illness of people with Crohn's is anemia, so I'm very tired almost always. I can't go out and get drunk and stay out til 4 AM like a lot of other kids in college, which can be tough on my social life, but my good friends understand. And I like to think I'm still pretty fun :)
5. Most people assume:
That I'm just a homebody/lazy. When I don't go out on a Friday because I'm having a flare, people tend to assume I just don't feel like it. And if I miss a class I often worry that my classmates and professors think I just don't care about the class, when in reality, during a flare it's a struggle to go anywhere.
6. The hardest part about mornings is:
Feeling rested, no matter how much I've slept.
7. My favorite medical TV show is:
Ahh I don't watch any, is that weird? I'm all about SVU and Criminal Minds.
8. A gadget I couldn’t live without is:
My computer, definitely. On a Friday night when your stomach hates you and you can't go to a party with friends, Netflix is your BFF.
9. The hardest part about nights is:
Nights aren't terrible unless I'm in a flare, which then makes it hard to sleep because I'll wake up with stomach cramps.
10. Each day I take __ pills & vitamins.
11. Regarding alternative treatments I:
Drink a lot of ginger ale? Haha yeahh that's terrible but true. I actually have found yoga somewhat helpful, because my life is a sick joke in the way that I suffer from panic disorder (a subset of anxiety disorders), and Crohn's is made worse by stress. So whenever I get panicky or upset, my stomach responds badly. For that, yoga and anxiety medications have been helpful.12. If I had to choose between an invisible illness or visible I would choose:
Both are really terrible, neither?
13. Regarding working and career:
In spite of the fact that a lot of people with Crohn's end up working from home, my case is (hopefully) not ever going to be that severe. I have had a part time job the whole time I've had Crohn's, and I'm currently getting my degree to become a high school English teacher, something I'm very passionate about.
14. People would be surprised to know:
That my illness bothers me more than people realize. I'll blog about it occasionally, but if it gets brought up in real life I generally brush it off like it's not a big deal. In reality, it's really hard to deal with constant stomach aches and feeling tired all the time when you're only 20. And it's even harder because a lot of people don't really know anything about what Crohn's is.
15. The hardest thing to accept about my new reality has been:
That there is no cure, and no "growing out of it". This is a disease I'll have for life.
16. Something I never thought I could do with my illness that I did was:
End up in a serious relationship. Crohn's is a super NOT glamorous disease, especially for a girl to have, and while my best friends were always super supportive and hilarious about it (we made lots of jokes), it's not something you want to bring up on a first date. Luckily, I'm with an incredibly understanding person who never makes me feel awkward and is always mindful of when I'm not feeling well. When I visit his family he even makes sure they have plenty of ginger ale :)
17. The commercials about my illness:
OH MY GOD DON'T GET ME STARTED. They're all like, "are you constantly running to the bathroom?" If I had a dollar for everyone who told me they saw a Crohn's commercial and thought of me and I cringed, I'd be a millionaire. It just bothers me because there's a lot more to Crohn's that=n "constantly running to the bathroom".
18. Something I really miss doing since I was diagnosed is:
Um, drinking? That's gonna sound really bad and make me sound like an alcoholic, but really. It's hard being in college and not having that social aspect, especially since I'll be turning 21 so soon. And sometimes I just want a glass of wine! (or five).
19. It was really hard to have to give up:
Luckily I haven't had to give up much, except money. My pills are HEINOUSLY expensive. Which is one of the major reasons I'm allll about Obama 2012, y'all, read some of my previous posts.
20. A new hobby I have taken up since my diagnosis is:
Blogging about my illness! Crohn's is one of those things that people either don't know about or are misinformed about. I've also become more politically involved, because healthcare costs so directly affect everything in my life now. Oh, and yoga.
21. If I could have one day of feeling normal again I would:
Oh god I would eat some bleu cheese fries from Al's roast beef and then I would get drunk off my ass. Again, that sounds bad. Sorry I'm not sorry.
22. My illness has taught me:
Empathy. People who need help paying for their tests or medications aren't asking for a handout, they're just asking for the necessary objects to be healthy enough to live and contribute to society. Also, it's made me able to put things in perspective. There's a quote from Garden State, by Natalie Portman's character (who is epileptic) that really sums it all up really well:
You laugh. I'm not saying I don't cry but in between I laugh and I realize how silly it is to take anything too seriously. Plus, I look forward to a good cry. It feels pretty good.23. Want to know a secret? One thing people say that gets under my skin is:
“You could drink." Yes. I could. I won't die from it. But I will spend the entire following day in extreme, extreme pain.
24. But I love it when people:
Ask genuine questions and care about the answers.
25. My favorite motto, scripture, quote that gets me through tough times is:
Above all, be the heroine of your life, not the victim.
26. When someone is diagnosed I’d like to tell them:
There will be bad days and there will be good days, but don't let your illness define you.
27. Something that has surprised me about living with an illness is:
That having a chronic illness isn’t the end of the world. It makes my life more difficult, yes, but everyone faces adversity. Mine is just in the form of inflamed intestines.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Brandon amazes me every day that we spend together. When I have bad days, he never pressures me to go out or do anything I can't or don't want to do. He just sits with me and watches Storage Wars and brings me ginger ale :)
29. I’m involved with Invisible Illness Week because:
It’s not something that I’ve been involved in before, but it's vitally important that people realize that just because someone seems healthy and fine doesn't mean they aren't struggling with something you can't see.
30. The fact that you read this list makes me feel: