My Invisible Chronic Illness

I am a diabetic. My friends and family know this about me, but to the rest of the world, those I choose not to tell, my illness is invisible. That’s the way I like it.

But today, I read a post on the blog of a fellow participant in the month-long haiku-a-day challenge on Haiku Heights, and I realized that “coming out” might help someone else.

The week of September 10-16 is National Invisible Chronic Illness Awareness Week. As a part of their campaign, they have designed a 30-question meme called “30 Things You May Not Know about My Chronic Invisible Illness.”

This is not something I normally do. I blog to write: fiction, poetry, and non-fiction creative pieces. But I seldom blog with one of these questionnaires. When you get to question 29, you’ll know why I did it this time.

So…

1. The illness I live with is: diabetes. It runs in my family.

2. I was diagnosed with it in the year: 2001. Most diabetics are on insulin about seven years after diagnosis. It’s been eleven years for me, and I don’t yet need insulin.

3. But I had symptoms since: This is one of the deadliest things about this disease. There are no symptoms.

4. The biggest adjustment I’ve had to make is: I watch everything – everything –  I eat and make choices based on how food will impact my glucose levels.

5. Most people assume: that I am just like them.

6. The hardest part about mornings is: I have what is called “dawn syndrome.” I begin each day with glucose reading that is too high and have to work from there.

7. My favorite medical TV show is: I like several, but it has nothing to do with my illness. I just like them.

8. A gadget I couldn’t live without is: my blood glucose meter. Maybe literally.

9. The hardest part about nights is: occasional insomnia. I have no idea if it is related to my diabetes, but I never had before I was diagnosed, so…

10. Each day I take 27 pills & vitamins. (The instructions say “No comments, please,” so I’ll refrain… until the next question.)

11. Regarding alternative treatments: “Treatments” for me are all in my control. I am not on insulin, and take only two pills a day to control my diabetes. But those other 25 pills? Some are doctor-prescribed to ward off known risk factors of the disease. But most are supplements some believe will help with glucose control, and are perhaps a little weird. For example, I go through the day with cinnamon breath. That’s not such a bad thing, right?

12. If I had to choose between an invisible illness or visible I would choose: neither, obviously. But since I have to choose, I’d say invisible.

13. Regarding working and career: I was closing in on retirement when I was diagnosed. The adjustments I had to make were all dietary so, in general, it didn’t interfere with my work.

14. People would be surprised to know: diabetes can be a bit of a blessing in disguise. I eat a much healthier diet and get more exercise now than I did before.  Other than the diabetes itself and cranky knees, I may be healthier than I was 15 years ago.

15. The hardest thing to accept about my new reality has been: never losing sight of the consequences of letting down my guard just because I feel OK. Diabetes can cause some really horrific things to happen to your body.

16. Something I never thought I could do with my illness that I did was: to indulge in sweets now and then. I grew up watching diabetics make huge sacrifices, never eating anything sweet and substituting those foods with nasty-tasting alternatives. I’ve learned that’s not necessary. Oh, and I walked 30 miles over two days in the Avon Walk for Breast Cancer. 30 miles! Who knew I could do such a thing!

17. The commercials about my illness: Commercials? What commercials?

18. Something I really miss doing since I was diagnosed is: There’s not really anything I’ve had to give up that I miss. I suppose I might say that it would be nice to just be without the constant vigilance, but really? It’s not so bad.

19. It was really hard to have to give up: See # 18.

20. A new hobby I have taken up since my diagnosis is: hiking, when my creaky knees permit.

21. If I could have one day of feeling normal again I would: Meh. I already feel normal.

22. My illness has taught me: you are what you eat. Really. And you can do anything if you put your mind to it.

23. Want to know a secret? One thing people say that gets under my skin is: not much, except maybe the things the would-be (non-medical) “experts” have to say. I’d rather they kept their opinions on what I “should” be doing to themselves. Diabetes is a challenge for even the real experts because everyone has a different experience.

24. But I love it when people: don’t suspect that I am anything but a healthy person.

25. My favorite motto, scripture, quote that gets me through tough times is: “I can do this.”

26. When someone is diagnosed I’d like to tell them: Learn as much as you can. Read, read, read. Ask questions. Pay attention to your body. Take control.  You can do this too.

27. Something that has surprised me about living with an illness is: It’s not as bad as I thought it would be. When I was first diagnosed, I’d walk through the grocery store feeling like there was nothing good that I could eat. I’ve gotten over that.

28. The nicest thing someone did for me when I wasn’t feeling well was: I am a controlled” diabetic. So far, I feel fine. It doesn’t hurt, thank heavens. But if (when?) things begin to go wrong, and odds are they will, I hope people will understand and accept.

29. I’m involved with Invisible Illness Week because: The National Institutes of Health (NIH) and Center for Disease Control (CDC) estimate that 6.5% of adults over the age of 20 living in the US have diabetes, and that number is on the rise. Remember I said diabetes has no symptoms? One third of them don’t know they have it. Many of those who do know they have it don’t do anything to control it because they feel fine. Make no mistake. Diabetes is a killer. But it doesn’t have to be.

30. The fact that you read this list makes me feel: hopeful. Odds are you know someone who is a diabetic or will be. It might be you. You know what to do.

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24 Responses to My Invisible Chronic Illness

  1. misterlou says:

    I. too, am a diabetic. I was diagnosed 17 years ago. I am not yet taking insulin, but I know that someday my pancreas will, having been over stimulated for so long by the medications meant to “control” my diabetes, give up the ghost and I will have to take insulin. I don’t eat a lot of sugar (but some – just some) and I ride my bicycle to keep my legs strong and to help control my diabetes and maybe that will be enough. Who knows?

  2. Tara R. says:

    This was awesome. I have rheumatoid arthritis, but it’s not a visible ailment. Even when it’s flaring, other than moving slower, most people don’t recognize it. I try to stay active, and am taking daily NSAIDS for the pain and swelling. For a lot of people, if they can’t see an outward manifestation, you aren’t really sick, or in pain. What’s the saying… ‘walk a mile in my shoes…” then pack your joints with ice.

  3. Patti, I am so glad you posted this. Information about diabetes and controlling it with diet and exercise is so important. It is on the rise and VERY invisible.

    You have inspired me to eat better! Food’s a big struggle for me. The fibromyalgia and heart disease create fatigue, as I’ve said and said and said!, and I reach for the sweets and carbs for a quick pick me up. Then of course I crash and start the sequence all over again.

    • Patti says:

      I understand, Judy. Learning to reach for something healthy was a challenge. Our culture in this country, through almost every type of media, pushes junk food at us.There are days I give into it. And then I eat like a rabbit for a couple of days to make up for it.

  4. James says:

    My family history being what it is, I really watch what I eat and how I treat my body. I do know what to do, thanks in part to you. It has been a very difficult month for me due to chronic illness of a family member coupled with negligence in regards to that illness. The lesson I am trying to convey from this trial (one I already knew, but the family member did not) is this; what you do to yourself has repercussions, not just for your own existence, but the existence of those around you. Self-discipline is an obligation we have to the ones we love. I love you, Mom, and I thank you for your diligence.
    Lou, you rock. Keep up the good work.

    • Patti says:

      I feel your frustration. Good luck with your efforts. As for me, I do my best. OK, maybe that’s not quite true. I could no doubt do better. But Vigilance and his brother Diligence are my friends. So far, they have been good to me. Thanks for your never flagging support and love. I love you too! And yeah, Lou does rock, doesn’t he?

  5. Baino says:

    I didn’t know that about you until recently. 27 pills …I don’t know how you do it but I guess you have little choice. I’m part of the “Dare for Diabetes” campaign running here at the moment. I have to give up something for six weeks and raise funds. Did ok for 3 fell off the horse this weekend but back on it again now. It is an insidious and invisible disease but I’m glad to be part of making people aware.

    • Patti says:

      Most of those 27 pills are supplements, because you never know. Reaching eleven years with no need for insulin tells me something is working. I’m glad you got back on the wagon. I’ve got an investment in your health now, you know. You can do this.

  6. Baino says:

    I still have to login to a WordPress account to comment here….weird

  7. Hi, it’s Ms. Fraudulent Peachy Daughter here, Love that I found your blog! My mom has diabetes, so far I don’t. I have an invisible illness called Fibromyalgia and Hashimoto’s Thyroiditis. Debilitating. Thanks for posting this about Diabetes, everyone should pay attention and no one, should ever drive themselves to the hospital, if they have chest pain!!!

    • Patti says:

      Thanks, Ms. FPD. I do most of my posting on my fiction and poetry blog – PattiKen and the Muses – and I don’t post here very often, as you can tell.

      Even though I have hypothyroidism, I had to look up the Hashimoto’s Thyroiditis. That sounds awful! I’m so sorry you have to cope with that and the Fibromyalgia.

  8. rosaria says:

    I came in from Grandmother, and glad to meet you. My husband was diagnosed with Type 2 Diabetes a couple of years now, and the most frustrating thing is to be always mindful about what we eat! I say “we” because I’m the cook and the shopper, and managing meals and snacks falls on me. Your answers should help so many people.

    • Patti says:

      Welcome, Rosaria. Nice to meet you too. I’m glad you found this post helpful.

      You are right, the mindfulness that must accompany eating is challenging at first. But after a while, it becomes second nature. For me, it’s a little like nutritional bookkeeping. Something in the Not-So-Good-for-You Column requires an entry in the Good-for-You Column. Keeping the books balanced is the goal. The routine A1C test tells you how successful you’ve been at that. Don’t worry. I know you will get the hang of it.

  9. Awesome, Patti. Your post will inspire others for sure. My neighbor was diagnosed with diabetes a couple of years ago and has managed to control her blood levels entirely through diet. Pretty cool. I have an invisible illness too – chronic fatigue, fibromyalgia and a host of other syndromes, all interconnected. The hard thing is I may feel like crap but I look normal and people expect- and actually demand – that I perform as if I was well. And nine times out of ten, I do. But at a cost to myself that they dont care about because it happens out of their sight.

    Interesting discussion in here today.

  10. 2zpoint says:

    Dad was recently diagnosed but has lived with it for years. It probably saved his life but he is paying some horrible prices because he waited so late. Needles feeling and such. Take care Patti

  11. Jamie Dedes says:

    Diabests is hard to manage and it is good to share info. In this case because people don’t realize they have it. Kudos, Patty, for this and for managing well.

  12. This is a very important post, Patti. I’m a nurse and a kidney transplant survivor. I spent only 3 months on dialysis, but in both capacities I’ve seen what uncontrolled DM can do.

    • Patti says:

      Thanks for commenting, Victoria. I’m happy to say that today, 14 years after diagnosis, my diabetes is still well controlled without need of insulin. As you know, it’s a lifestyle adjustment, hard at first, then easier with the passage of time. I’m shocked that so many (some of them in my family) don’t make the effort.

  13. Bodhirose says:

    This was very interesting to read, Patti. I’m sorry that you have diabetes but it sounds like you’re a grade A patient who has plunged head first into taking control and doing all that you can to stay healthy…bravo! I worked for a man (an attorney) who was a diabetic and did not take care of himself and he ended up having to close his practice because of ill health. He was only in his sixties but he would sabotage himself with the very worst diet for his condition.

    I ended up here because I clicked on your name when you left me a comment for OLN and I thought it would take me to your link but I found myself here instead…just as well, it’s good information. I just had my yearly physical so everything is well with me, thank goodness.
    Gayle ~

    • Patti says:

      Hi, Gayle. As you’ve no doubt figured out, i have two blogs, one for fiction and poetry, and this one which is more general. — My brother is like the attorney you mention. He couldn’t have a worse diet. Shockingly bad. Now he is a wreck. He’s lost toes, has so much wrong with him, and he’s still in denial. I’m glad your physical brought good news. Despite my diabetes, mine did too.

      • Bodhirose says:

        Yes, I see that, Patti, but it looks like the posting I just read may have been your last on here. At least for the time being perhaps. So sad to hear of your brother’s condition. My boss would sometimes “confess” to me about going to the grocery store and loading up on junk food…eating parts of all of it and then throwing it out. It felt like self hatred to me. It was so over-the-top destructive to his health. I’m glad to hear that you’re managing so well.

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