Tag Archives: national invisible chronic illness week

More Thinking About Perspective


When you find out that you have (or someone you love deeply has) a chronic condition, whatever that chronic condition is, it is kind of like suddenly finding yourself lost in a lonely little rowboat in the middle of a dense fog bank.

You may not be alone.  You may have the best support system around you that you could ever dream of having, but finding out your new reality hits you so hard that you suddenly find yourself lost.

The sun may burn off the fog in hours, days, or months.  The wind may fill your sails and push you out of the fog.  It may roll back in later, but it will likely not be as thick or as frightening the next time you find yourself feeling lost.

If you are the one in the fog, reach out to the light houses along your way, find your candle on the water to help you find your way.  If you have been in the fog… you can be someone’s lighthouse, even if it is only virtually (on line… on facebook or other social networking site, or in another medium).  If you love someone who finds themselves being lost… understand that the fog can roll in suddenly and overwhelm their little boat… throw them a rope so they can feel safe.  Knowing the rope is there, knowing the light house is there, knowing that there is anyone who gets it (understands, has been there, gives a dam) is sometimes the most important thing in the world.

30 things you don’t see about me

This is National Invisible Chronic Illness Week…  What don’t you know about MY chronic illness?

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: acknowledging that I have limitations
5. Most people assume: I’m whining
6. The hardest part about mornings are: eye drops and getting out of bed without wincing
7. My favorite medical TV show is: Beekman Boys (at least that is my favorite today!)
8. A gadget I couldn’t live without is: my brush.  It is a dog brush that I bought for me because you hold it in the palm of your hand and you don’t have a brush handle
9. The hardest part about nights are: rolling over
10. Each day I take _6_ pills & vitamins. (No comments, please)… soon this will have eyedrops that burn and injections weekly… right now, I have 10 extra pills every friday night
11. Regarding alternative treatments I: take hot baths and rest… yoga when I can and meditation
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: I work between 40 and 80 hours a week
14. People would be surprised to know: I walk half marathons
15. The hardest thing to accept about my new reality has been: mortality
16. Something I never thought I could do with my illness that I did was: walk a half marathon last February
17. The commercials about my illness: annoy me.  There is one.  It is for a very expensive self injectable that insurance doesn’t actually pay for most of the time (oh joy)
18. Something I really miss doing since I was diagnosed is: not thinking about what I wear on my feet.  I haven’t been able to wear my good cowboy  boots in almost 2 years
19. It was really hard to have to give up: the freedom of making some choices
20. A new hobby I have taken up since my diagnosis is: blogging more reliably
21. If I could have one day of feeling normal again I would: run
22. My illness has taught me: that I am mortal and that there are a lot of people who are invisible like me
23. Want to know a secret? One thing people say that gets under my skin is: OH I would SO apply for disability if I were you
24. But I love it when people: just talk to me like I’m normal.  Last Rheumy visit this little guy spent my whole wait time talking to me about the office paintings and books and my nook.
25. My favorite motto, scripture, quote that gets me through tough times is: it doesn’t matter if you think you can or you think you can’t you are usually right.
26. When someone is diagnosed I’d like to tell them: your life isn’t over, it’s just that a different chapter is starting.
27. Something that has surprised me about living with an illness is: I can learn to not puke when I really feel like puking.
28. The nicest thing someone did for me when I wasn’t feeling well was: a gentle hug
29. I’m involved with Invisible Illness Week because: it matters
30. The fact that you read this list makes me feel: sad that you had to, but happy that maybe you will find some hope in your day.

Consider it… who around you, every day, may have an invisible illness?  Fibro?  RA?  Epilepsy?  Depression?