It’s Invisible Illness Awareness Week, and nobody told me.
I feel like, as a Chronic Illness Blogger, I should have gotten the memo. There really should be some sort of Bat-Signal that goes out in the sky, so that we are all on the same page. Seriously. Gosh. Thanks a bunch to A Southern Celiac mentioning it on her Facebook page because I would have totally missed it had she not. #ILiveUnderARock
Invisible Illness Awareness Week was started way back in 2002 by a woman named Lisa Copen. Cheers to you, Lisa Copen, wherever you may be. Thank you for getting the word out that Invisible Illnesses are real and that they matter!
This year’s theme is Just One. Invisibleillnessweek.com says, “You may be just one, but you are one of over 100 million people who live with a chronic illness, and most of the illnesses are invisible. This year, choose to do JUST ONE THING… Whether it is to blog, post on social media, talk to a friend, share an article with a loved one…. do ONE thing that will make a difference.”
You may have seen these lists making the rounds on your favorite social media sites, 30 Things About My Invisible Illness You May Not Know. I’m going to share mine as my post today. I encourage every Chronic who feels comfortable sharing to do the same. If you want to share with me, I’d love to hear it, so leave me a comment here or on Facebook (www.facebook.com/iamchronicallywell). Pick your favorite question and let me know the answer!
Here’s my list:
30 Things About My Invisible Illness You May Not Know
1. The illness(es) I live with is/are: POTS (postural orthostatic tachycardia syndrome), migraines, CVS (cyclical vomiting syndrome), Fibromyalgia, and PMLE (polymorpheous light eruption)
2. I was diagnosed with it in the year(s): 2002, 2009, 2010, and 2014
3. But I had symptoms since: Forever. I can remember being unnaturally dizzy even when I was little.
4. The biggest adjustment I’ve had to make is: Staying home so much
5. Most people assume: I assume that people assume (a whole lot of assuming going on here…) that either a) I’m handling myself very well for someone who deals with so much or b) that I’ve completely lost my marbles. The truth is somewhere in the middle.
6. The hardest part about mornings are: I have to take my meds at the same time every day, and I have to take them before I’m able to function. Somehow this works out that I have to wake up at 8am every day even if I don’t want to, because I have to stay on schedule and eat before I take anything.
7. My favorite medical TV show is: Grey’s Anatomy, though really just Seasons 1-6 (Izzy and George should have been together in Seattle Grace Heaven! I just can’t get over this!)
8. A gadget I couldn’t live without is: My iphone because it reminds me to take my meds =)
9. The hardest part about nights are: That they are equally too long and not long enough.
10. Each day I take __ pills & vitamins. (No comments, please) : I’m down to 12 (woot, woot!). My record was somewhere near 30 so I celebrate those 12 little pills.
11. Regarding alternative treatments I: have done everything from balancing my chakras to having acupuncture needles uncomfortably close to my eyeballs. Only some of it was helpful.
12. If I had to choose between an invisible illness or visible I would choose: I really don’t like this question. I don’t believe in comparing illnesses/disabilities because each has their own ups and downs.
13. Regarding working and career: It’d be really nice to get a book deal.
14. People would be surprised to know: I don’t know that anyone would be surprised by anything about me by now, haha.
15. The hardest thing to accept about my new reality has been: That I have to go through all of the letters of the alphabet because Plan A, B, and C have not worked out.
16. Something I never thought I could do with my illness that I did was: Go on vacation. Last year we drove to Tennessee for 10 days and although I was covered in a PMLE rash I didn’t die! (and actually had fun!)
17. The commercials about my illness: don’t exist, but would be really weird…I can’t think of anything specific right now, but I envision lots of stick figure people falling down
18. Something I really miss doing since I was diagnosed is: Going to the mall with my friends, even though we are old now and haven’t been mall rats since the early 2000s.
19. It was really hard to have to give up: Gluten, <OhMyGosh> I miss it so, so much.
20. A new hobby I have taken up since my diagnosis is: Sewing Superhero elephants.
21. If I could have one day of feeling normal again I would: Ride rollercoasters. All those signs that say “You should not ride this ride if you have a heart condition”? I would breeze right past those suckers.
22. My illness has taught me: To be less judgmental
23. Want to know a secret? One thing people say that gets under my skin is: Complaining that they are so tired. Because you know what? I bet you are making choices that end in you being tired- you go to work, you have plans with friends, you stay up late to watch Scandal, etc. I’m tired without the fun of using up the energy-it was never there to begin with.
24. But I love it when people: Say they love my blog! It makes my whole day every time I hear it.
25. My favorite motto, scripture, quote that gets me through tough times is: “Alles ist goot”. It means “all is well” in German.
26. When someone is diagnosed I’d like to tell them: It may feel like the end of your world, but it’s not the end of you. Everyone’s life goes through changes. This is your change. You can’t control your illness but you can control how much you let it bring you down. Don’t let it bring you down!
27. Something that has surprised me about living with an illness is: You never realize how much your body is capable of until it STOPS being capable of those things. Bodies are AMAZING. Really.
28. The nicest thing someone did for me when I wasn’t feeling well was: Came to my house to see me (instead of us going out), and really only stayed an hour when I said “I can only handle an hour.” Also, not holding it against me when they offered to come to my house to see me and I just couldn’t function and had to say “No, but thank you so, so much for offering!”
29. I’m involved with Invisible Illness Week because: I believe you can be what you can see. When I was first diagnosed, I didn’t have any Chronic role models. I was under the impression that you get a chronic illness and you hide under the covers for the rest of your life, because no one was “out-there” for me to see doing otherwise. So that’s what I did, until I decided not to anymore. I want other Chronics to see that you can still be YOU with chronic illness.
30. The fact that you read this list makes me feel: All warm and gooey inside, like a perfectly baked brownie…mmm…brownies…
Now get out there and spread your own awareness, Friends! Be sure to visit http://www.invisibleillnessweek.com for ideas and all sorts of Chronic goodies. Happy Invisible Illness Week!