Invisible Illness Awareness Week

i_am_what_a_person_with_an_invisible_illness_looks_magnet-p147049417269810181z85qu_400This week is Invisible Illness Awareness Week (of which I have two), and I spotted this survey over on Rose’s blog. I thought I’d fill it out and encourage you to do the same!

1. The illness I live with is: I have type 1 diabetes and depression.
2. I was diagnosed with it in the year: I was diagnosed with type 1 diabetes in 1994 and depression in 2012.
3. But I had symptoms since: My parents say I became symptomatic around the summer before my diagnosis in 1993, but I didn’t really feel the full effects of the impending destruction of my beta cells until after I had the flu in December 1993. I was diagnosed at the end of January. As for depression, I probably have had it awhile so I don’t think I could pinpoint a specific timeframe.
4. The biggest adjustment I’ve had to make is: Despite growing up with diabetes, I feel like I’m constantly learning to integrate it into my life. Diabetes doesn’t make things easy. It’s like living with a loud, obnoxious, bratty 2-year-old all the time.
5. Most people assume: So many things. I think the biggest assumption is that my life is horrible. Lots of pity looks and “Oh I’m so sorry” which is nice, but kind of uncomfortable. There are also a lot of assumptions about what life is like, “Just take shots” or “Can’t have any sugar”
6. The hardest part about mornings are: Remembering to test. I’m so not a morning person so I tend to be a zombie wandering around the apartment, throwing on clothes, making coffee, checking email… and maybe remembering to actually test. I usually do it within the first 20 minutes and definitely before I eat… but since I don’t always eat right away, testing isn’t always forefront of my mind.
7. My favorite medical TV show is: Honestly, the only one I’ve ever watched is House! I’ve never seen an episode of ER and I think only one episode of Grey’s Anatomy.
8. A gadget I couldn’t live without is: Diabetes-wise? My glucose meter is probably the only thing I couldn’t live without. Followed by insulin pump. Followed by CGM.
9. The hardest part about nights are: Waking up with a low blood sugar is just about my least favorite thing. Like ever. In the history of anything.
10. Each day I take __ pills & vitamins. (No comments, please): I take one pill (for depression) and no shots right now, since I’m on an insulin pump.
11. Regarding alternative treatments I: have never tried them, so I can’t comment. I think alternative treatments can be good for certain ailments, but not applicable in all cases, and certainly not if there’s an emergency going on.
12. If I had to choose between an invisible illness or visible I would choose: Definitely invisible. I can’t imagine the pre-judgements and stigma that comes from just leaving your house in a wheelchair or a cane. I’m glad people see me first, not my disease.
13. Regarding working and career: Diabetes has been a huge influence!
14. People would be surprised to know: that my blood sugars are not really exceptionally great. My last one was in the high 7s, but I’ve been in the low 8s for awhile. Sometimes I am embarrassed and ashamed that someone in my position (as a role model, future CDE, advocate) has such “poor” diabetes management.
15. The hardest thing to accept about my new reality has been: I don’t think it’s been too hard to accept my reality, since I’ve been this way forever. But sometimes I do get upset that I didn’t get a chance to experience more things “normal.” I know there is never a good time to get diabetes, and I don’t want to start a debate, but sometimes I get a little jealous of my friends who were diagnosed in their 20s, 30s and 40s. Of course, I also sometimes feel sorry for them, so like I said, you can’t win!
17. The commercials about my illness: I strongly dislike all of them.
18. Something I really miss doing since I was diagnosed is: I don’t really have many memories before having diabetes, so I’m not sure there is anything that I miss. There are just things that I wish I didn’t have to do.
19. It was really hard to have to give up: There are probably a lot of things I should give up, because of how I can see them affecting my blood sugars, but the one thing that I did give up a few years ago and didn’t look back was cereal. We don’t buy it, and I never order it anywhere, so it’s pretty much out of my life.
20. A new hobby I have taken up since my diagnosis is: Blogging! Although it’s hardly new. I’ve been doing it a long time. But my diabetes is what inspired me to start.
21. If I could have one day of feeling normal again I would: I would probably choose that day to run a marathon or something, if I knew in advance when it would be.
22. My illness has taught me: That there are so many beautiful people in the world.
23. Want to know a secret? One thing people say that gets under my skin is: I probably get more upset by how people talk about type 2 diabetes than type 1 diabetes! Pretty much any kind of comment like “Well if they would just take care of themselves, we would have this epidemic.” Excuse me while I outline the genetic, physiological and socioeconomic factors that play into who gets type 2 and who doesn’t.
24. But I love it when people: Asks me a second question after I address their first question (or misstatement). It shows me that they are engaged and curious.
25. My favorite motto, scripture, quote that gets me through tough times is: “When life hands you lemons, make lemonade!”
26. When someone is diagnosed I’d like to tell them: Relax. Take it one day at a time. Do your best. We’re here for you.
27. Something that has surprised me about living with an illness is: How many people know people with diabetes and yet know nothing about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: I’ve lost track of the number of diabetes supplies friends have given me… insulin, test strips, syringes… I’m such a mooch. And wildly unprepared.
29. I’m involved with Invisible Illness Week because: It’s important for people to see how many people are affected.
30. The fact that you read this list makes me feel: loved. :)

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