Monday, September 10, 2012

Invisible Illness Awareness Week, Sept 10-14


Happy Invisible Illness Awareness Week!

No, I wasn't being sarcastic when I typed "happy" at the front of that sentence. Of course I also didn't mean, "Woo-hoo, look at me! I have a chronic illness that people can't see, and yet it affects most aspects of my life, very often in severely negative ways. Time for a fiesta!"

Although I can't speak for everyone out there who lives with an invisible illness, I can say that for me this week is largely about allowing myself to take a good look at my own illness, the simple fact that it's there, and the various roles that this illness plays in my daily life (and it is daily, whether I'm feeling sick or not).
InvisibleIllnessConference.com - where this week's virtual conference is happening!
My illness, in case this is your first visit to my blog (in which case, welcome!), is Crohn's Disease. Crohn's is an auto-immune disease, meaning my immune system instinctively attacks what it believes to be "the enemy" (for lack of a better term), which is my digestive system. In simpler terms, I've got a bad gut. The ramifications of active Crohn's are many: decreased absorption of essential nutrients, abdominal pain, fever, lack of appetite, night sweats, constant & frequent diarrhea, weight loss, depression, and anxiety (to name a few).

I admit that getting to a place where I can openly devote time to focus on my illness is not easy for me. My family of origin (God bless 'em), tended to use the age old Scandinavian strategy called "If you pretend it's not there then it doesn't exist." It's also tempting to believe that if I just quit thinking about being sick all the time then at least I'd be able to set my mind on something else, and maybe I wouldn't be so sick. Of course messages like these are not helpful, even if they do come from well-meaning people who sincerely care about us (sometimes these messages even come from ourselves).

This week's theme song.
The truth is, however, positive change is not possible unless we first acknowledge the fact that we have an illness. We don't have to like it, but we have to see it, name it, and own it. Only then is it possible to shape a life with some of the flexibility that's needed in order to cope from day to day. It's also helpful to remember that my ability to cope and function today may be very different from yesterday, and I won't know about tomorrow until it gets here. For me this is one of the bigger challenges, because I want stability and predictability, two things that were pretty much taken from me when I was diagnosed with this disease.

My chosen theme song for the week (gotta have a theme song, c'mon!) is Journey's "Be Good to Yourself". I hope that all of you with an invisible illness who may be reading this DO make time to take proper care of your mental, physical, and spiritual well-being. I know it's not always easy to do this, but more often than not I think we find that it's time well spent.

xxxooo much love,
JEFF

1 comment:

Dawn Santos said...

You are right. The biggest part of my battle (Fibromylgia, CFS) is not really allowing my brain to process what I "have" so I struggle with trying to make my body do and feel and behave in a way it really doesn't want to or even cant.I eat very well, exercise, and try to stay positive but often find myself resentful when I am in pain or worn down.Trying to realize when I have done it to myself as a result of pushing too hard, or just when its the Fibro...its been 4 years since a diagnosis, 9 since I've had it. Still balancing. I feel like if I accept it it won. I'm still working on in:) Have a great day. Good post!