What Invisible Illness Looks Like

Moreover… what my invisible illness looks like.

Nearly half of Americans live with some form of chronic health condition (at least according to this). In honor of Invisible Illness week this week, I’m shedding more light on my life with type 1 diabetes.

30 Things About My Invisible Illness You Might Not Know

1. The illness I live with is: Type 1 Diabetes (but you probably already knew that)

2. I was diagnosed with it in August 2011

3. But I had symptoms since July 2011

4. The biggest adjustment I’ve had to make is: thinking about everything in my life with the question: How will this affect my diabetes? (food, exercise, travel, sleep, sex… everything.)

5. Most people assume: that I can’t eat various foods (cupcakes, cookies, bread, cheeseburgers) but the reality is that I can eat anything that I want to, I need to take the appropriate amount of insulin. I don’t eat a lot of things because they aren’t worth their effect on my health. I can’t eat fish because I’m allergic to it.

6. The hardest part about mornings are: waking up if I’ve had my sleep interrupted by high or low blood sugar during the night. Otherwise starting my day with stable numbers, which means having a smart breakfast, eaten over a period of time, because once I start a blood sugar bounce, it’s hard to stop.

7. My favorite medical TV show is: Grey’s Anatomy (I also like House)

8. A gadget I couldn’t live without is: my meter. I make every decision based on the numbers it gives me, which is why accuracy is so important.

9. The hardest part about nights are: having to eat a snack when I don’t want to (after I’ve brushed my teeth!) or not being able to enjoy a snack when I do want to.

10. Each day I take between 22-30 units of insulin via my pump, 1 pill and 4 vitamins/supplements. (This called for no comment only leaving blanks for pills and supplements, no room for injected medication because few illnesses require the patient to administer their own injections.)

11. Regarding alternative treatments I: don’t believe there are really “alternative treatments” for type 1 diabetes (ie not insulin), exercise and diet are a very important component of self-management so I embrace them in my own care.

12. If I had to choose between an invisible illness or visible I would choose: my invisible illness. Although I don’t think presenting a switchable situation is a good way to reflect living with diabetes, but sometimes I prefer to live in certain moments when my diabetes isn’t the focus. I’m more than my illness and don’t want diabetes to get the spotlight. For as much as I blog about it, I don’t talk about it offline nearly that much.

13. Regarding working and career: Most days it’s not a big deal. I work a professional job and have the privacy I need to change a pod if one happens to fail at work. But other times, it can make things awkward, for instance when someone comes into my office while I’m testing my blood sugar, they often feel compelled to ask how it is. Lunch meetings and office food are rarely convenient because they don’t really work well with the timing I have to live with, it’s tough to bolus 30 minutes early for a lunch meeting if you don’t know when lunch is arriving or will have to SWAG it and you need to see to swag. Other times, when there is birthday cake or treats sent by vendors, I feel like I get judged if someone runs into me in the hallway with a piece of cake, because they don’t realize that I can eat what I want (see #5).

14. People would be surprised to know: a.) How expensive it is to care for diabetes. b.) That I still have trouble giving myself shots. c.) That I am still able to get/have other illnesses even though I have type 1 diabetes. d.) that everything hinges on carbohydrates for me, not sugar. e.) that cheese is not “a carb.”

15. The hardest thing to accept about my new reality has been: that no one really cares to try understanding all of it.

16. Something I never thought I could do with my illness that I did was: Fortunately, I can’t answer this question. I’ve never doubted my ability to do anything with diabetes.

17. The commercials about my illness: either depict little kids getting shots or old people hawking free meters of a new insulin pen, leading the public to believe that healthy 20-somethings don’t get type 1 diabetes. I recently saw a Glucerna commercial featuring a 30-40ish, thin woman and I was stunned they they actually portrayed someone who wasn’t a stereotype.

18. Something I really miss doing since I was diagnosed is: eating whatever and whenever I wanted.

19. It was really hard to have to give up: fun treats like candy corn and circus peanuts

20. A new hobby I have taken up since my diagnosis is: sewing. It has nothing to do with having diabetes and everything to do with being creative.

21. If I could have one day of feeling [being] normal again I would: eat and do what I want without worry and enjoy the time without devices stuck on/in my body.

22. My illness has taught me: patience, self control and conscious living.

23. Want to know a secret? One thing people say that gets under my skin is: “How’s your sugar?” My numbers are mine, I make all of my choices by them and they have immense power to make me feel confident, guilty, angry and a whole range of emotions that people don’t understand. They’re just numbers to others and honestly numbers that aren’t anyone’s business. Also I’m not a fan of blood sugar or blood glucose being referred to as just “sugar.” (A close second is, “Here, you can eat this. It’s sugar free!“)

24. But I love it when people: treat me like a normal person and don’t stare when I test or analyze my plate.

25. My favorite motto, scripture, quote that gets me through tough times is: I’m more than my diabetes.

26. When someone is diagnosed I’d like to tell them: “You are not alone. You can do this.”

27. Something that has surprised me about living with an illness is: that some days it feels like diabetes is my entire life and other days diabetes is such a small part of my life that it’s easy to forget.

28. The nicest thing someone did for me when I wasn’t feeling well was: when I was hospitalized at my diagnosis, everything was so crazy for my husband and I that my mother- and brother-in-law washed all of our dishes, then she helped my husband grocery shop and took me to the follow up appointments after I was discharged.

29. I’m involved with Invisible Illness Week because: I believe that it’s important to have a conversation about invisible illnesses and spread acknowledgement, education, acceptance and advocacy.

30. The fact that you read this list makes me feel: good that you want to know about living with an invisible illness.

Here are others’ answers to the same 30 questions.

Leave a Reply