Did you know that Invisible Chronic Illness Awareness Week is just a few weeks away? This year it runs from September 13th to 19th. I came across a post on WEGO Health about the annual meme 30 Things About My Invisible Illness You May Not Know and knew I wanted to participate.
I struggled somewhat as I filled my meme out. Part of me wanted to type in the safe answers, the first things that popped into my head as I read each item. But that won’t raise much awareness. So I decided to really give each item some thought and type in the answers that were most honest. Some may surprise you. Some may sound overly dramatic. Hopefully one or two will make you chuckle or nod your head in agreement or teach you something about diabetes that you don’t know.
30 Things About My Invisible Illness You May Not Know1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year: 1979.
3. But I had symptoms since: at least a few months before my diagnosis.
4. The biggest adjustment I’ve had to make is: realizing that sometimes, even if I do everything exactly right, my blood sugars will still go out of whack - and that this doesn’t mean I’m to blame.
5. Most people assume: I can’t eat anything with sugar in it.
6. The hardest part about mornings are: the same things that are hard all day long. Diabetes is happy to mess with me at any time of the day or night.
7. My favorite medical TV show is: House M.D., although I suppose that doesn't count since it’s completely fictional.
8. A gadget I couldn’t live without is: literally as well as figuratively, my insulin pump. Okay, I could live without it if I went back to multiple daily insulin injections (between 5 and 10ish injections a day), but my diabetes control would surely suffer.
9. The hardest part about nights are: getting to sleep despite the fear that my blood sugar could go low and this could be the time I’m not able to wake up and treat it . . .
10. Each day I take __ pills & vitamins. (No comments, please) I take 2 pills a day, plus iron, plus a weekly dose of Vitamin D. I also do finger sticks to check my blood sugar 8 to 12 times a day and am connected to my insulin pump at all times except while showering.
11. Regarding alternative treatments I: get so angry at “snake oil” cure claims that do harm by spreading misinformation. There is no cure for Type 1 diabetes. There is no seed, oil, berry or magic potion that will make my body start producing insulin again.
12. If I had to choose between an invisible illness or visible I would choose: an invisible one - I suppose that is partially because I have no idea how it feels to live with a visible one. I also kind of like knowing that I can chose who gets to know about my illness.
13. Regarding working and career: diabetes was a big reason why I left the stressful and unhealthy environment of my former job. As for my future, I am hoping to find a job that will allow me to draw on my passion for Health Activism.
14. People would be surprised to know: that I feel broken and I fear being a burden to my loved ones.
15. The hardest thing to accept about my new reality has been: the realization that a cure in my lifetime is not likely.
16. Something I never thought I could do with my illness that I did was: live into my 40s and be free of complications.
17. The commercials about my illness: sometimes say “with our meter you no longer have to prick your finger for blood”. What they don’t tell you is that you have to prick your arm instead.
18. Something I really miss doing since I was diagnosed is: just sitting down and eating. No weighing food, no timing insulin doses, no need for a freaking math degree to calculate carb grams and insulin units.
19. It was really hard to have to give up: the notion that a low or high blood sugar means I failed. I’m still not 100% sure I have given that up.
20. A new hobby I have taken up since my diagnosis is: knitting? Cooking? Gardening? I was 11 when I was diagnosed, so there are a lot of them. However, I have given up playing with Barbie dolls.
21. If I could have one day of feeling normal again I would: start my day off with a huge bagel, and maybe a donut. Then I would swim and lay in the sun without worrying about my insulin pump. I’d eat as much Mexican food as my stomach could take. And follow it with ice cream. I’d do this all without having to squeeze blood from my finger onto a stupid strip to see how this day has wrecked my blood sugar.
22. My illness has taught me: that I can be strong and weak at the same time.
23. Want to know a secret? One thing people say that gets under my skin is: “You’re not supposed to eat that!” Can I give you another one? Because a close second is “My grandmother / uncle / other random relative had diabetes and went blind / had to go on dialysis / had their foot amputated.” Really, what would make you walk up to me and say something like that?
24. But I love it when people: ask questions because they truly want to understand my disease instead of buying into the myths about diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: It doesn’t have to be perfect; it just has to be better than it was.
26. When someone is diagnosed I’d like to tell them: you can do this. Some days it will seem very very hard. But some days you’ll just be on auto-pilot and everything will become a mindless routine.
27. Something that has surprised me about living with an illness is: that I’m not alone. There is a huge community on-line who will love me and support me and know exactly what I’m going through.
28. The nicest thing someone did for me when I wasn’t feeling well was: let me know he loves me, in good times and bad.
29. I’m involved with Invisible Illness Week because: I want to do my part to spread awareness of all invisible illnesses.
30. The fact that you read this list makes me feel: a bit self-conscious but very grateful that you took the time to learn more about my illness.