I am grateful to my friend Michael for allowing me to post his 30 Things Meme for Invisible Illness Week on WhatTheJules. Michael is on the advisory council for The Chronically Awesome Foundation, but more importantly he is on MY advisory council, always there when I need him. When you get some time, visit Michael’s blog “Postcards From The Fog“. I suggest you listen to Pink Floyd on 11 as you read.
30 Things About My Invisible Illness You May Not Know
By Guest Blogger, Michael Galli
“But you don’t look sick!” is a phrase I hear often. But I have never really looked at what my frustration is with that phrase, where it comes from, and how I deal with it. At least until recently. As part of Invisible Illness Week, friends have asked me to share my answers to these thirty questions. You can find the answers below, and more information visit the Invisible Illness Week 30 Things Meme page. My answers may be a surprise to the people who know me. I hope it is a pleasant surprise, but also a wake-up call to become more aware of our family and friends who have an invisible illness.
1. The illness I live with is: thyroid cancer
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: dealing with side effects of hyperthyroidism from taking high doses of thyroid replacement hormones as part of the cancer treatment.
5. Most people assume: that I will get better, all I have to do is take my meds.
6. The hardest part about mornings are: figuring out what kind of day I will have physically and mentally.
7. My favorite medical TV show is: MASH
8. A gadget I couldn’t live without is: My smartphone (I know, original)
9. The hardest part about nights are: pain in my hands in feet, keeping me from staying asleep.
10. Each day I take __ pills & vitamins. Two
11. Regarding alternative treatments I: am open to research and study, but my situation is pretty straightforward.
12. If I had to choose between an invisible illness or visible, I would choose: neither
13. Regarding working and career: I’m still able to work, but I may have to make more adjustments.
14. People would be surprised to know: My illness has turned on an activist mode inside me. I’m more outgoing than before my cancer when it comes to illness awareness.
15. The hardest thing to accept about my new reality has been: my perpetual reliance on a synthetic version of a hormone that I need but no longer can produce. Also, the constant struggle to “tweak” it just right to minimize side effects.
16. Something I never thought I could do with my illness that I did was: nothing comes to mind. Except becoming active in support communities.
17. The commercials about my illness: are nonexistent!
18. Something I really miss doing since I was diagnosed is: sleeping without interruption.
19. It was really hard to have to give up: nothing given up. Except my thyroid. 😉
20. A new hobby I have taken up since my diagnosis is: chronic illness awareness activism. I think it’s becoming more than just a hobby…
21. If I could have one day of feeling normal again I would: Do nothing different, except rest up for resuming a life of my new normal.
22. My illness has taught me: I have a lot in common with a lot of people. And we can help each other.
23. Want to know a secret? One thing people say that gets under my skin is: “With that being said…”
24. But I love it when people: I hope today is a good day for you.
25. My favorite motto, scripture, quote that gets me through tough times is: (Oddly, this question was the hardest to answer. I love literature. I have so many favorites.) “I hold a beast, and angel, and a madman in me.” – Dylan Thomas. It reminds me that, no matter the situation, I will always come out on the other side with the help of one, two, or all three of those parts of me.
26. When someone is diagnosed I’d like to tell them: Everybody’s case is different. But you don’t have to be alone.
27. Something that has surprised me about living with an illness is: how extreme the changes are day-to-day, physically, mentally, and emotionally.
28. The nicest thing someone did for me when I wasn’t feeling well was: they asked me to tell them what they could do to help. They didn’t assume what I needed.
29. I’m involved with Invisible Illness Week because: Men are often overlooked, and support can be difficult to find when it comes to their invisible illnesses.
30. The fact that you read this list makes me feel: hopeful, that awareness is spreading, and that people will become more empathetic to others suffering invisible illnesses, even if it’s just friends and family.