Tuesday, October 11, 2011

The Invisibility of Invisible Chronic Illness

In an ideal word, I would have managed this post during National Invisible Chronic Illness Awareness Week, which was Sept. 12-18. But better late than never, right?

So I have a friend. She's someone I've known since before I got sick because we have kids the same age. I'll call her L.

L is a great friend, who's always willing to help someone out whether it's convenient for her or not. When a babysitter falls through, she's the first one to volunteer to have your kid over for an extended playdate. Need help with something at your house? She's right there. She and her family don't earn a lot of money, but she's so generous she would give a friend her last dollar. She's smart, has a sarcastic sense of humor, and is just a fun person to spend time with. Although she would deny it, she's always been the "cool kid" in any gathering I've seen her in. 

So when I had a chance to have a girls night out with her recently, I jumped on it. I modified my schedule so I had two stay-at-home days leading up to our date. I scheduled acupuncture for that afternoon since it generally gives me a solid energy boost. I even took the full dose of Adderall my physician prescribes for my intense fatigue. She volunteered to drive. 

Keep in mind that my "night out" started at 5 p.m. and I was home and ready for bed by 8:30 p.m.  This was not some late-night affair with drinking and dancing for hours, or at all for that matter. 

It was a charity event that we spent a little more than an hour at, and then decided to stop at a restaurant across the street to get something to eat. While we were waiting for our salads, I mentioned that I was proud of myself for not canceling at the last minute, which is what tends to happen with my occasional evening commitments. (I try not to make evening commitments because I'm usually wiped out within a few hours of waking up.)

I don't remember exactly what prompted her comment, but I was struck (momentarily) speechless when she said something along the lines of, "You know, you never look all that tired when I see you." 

"That's why it's called an invisible chronic illness," I eventually replied.

"I know, I know -- but you don't seem so tired," she said.

So I started explaining all the trade-offs I make on a daily basis, including the ones I mentioned above that I'd made to go out with her. And, I confessed, I was probably going to end up missing the Portland Area Fibromyalgia and Chronic Fatigue Syndrome support group meeting the next day that I'd hoped to attend. (Sure enough, I didn't leave the house again for four days, and even then I still felt like I was running on empty.)

The more I thought about it, the more it made sense to me, even though I had thought she was one of the healthy folks who "got it." 

But it's true -- she rarely, if ever, sees me when I'm at my worst because I stay home those days. Heck, I tend to stay home even on my moderately bad days. So she only sees me when I'm either feeling good or there's something (usually kid-centered) that I feel like I can't miss and I hide how I'm feeling as best I can. And try hard not to crash or collapse until I'm home.

More than four years into this illness, I'm not sure how to figure out where the line is between sharing the details of how I'm feeling with my friends and becoming the boring person who's always whining about her health. I try to err by not discussing my health unless I absolutely have to (except on my blog, where I feel free to whine as much as I want, and Facebook, where it comes up sometimes :-), and it's rare that I absolutely have to discuss it.

But is that a good thing or a bad thing? Am I doing a disservice to other people out there with invisible chronic illnesses by not being more vocal about it? 

I've read so many statistics about the huge (but invisible) numbers of Americans who have chronic illnesses, which can be anything from mild allergies to cancer, a huge range. Some of them are easily controlled with medication and no big deal to live with. Others aren't so easy to live with even if there are few, if any, outward signs.

I don't know what the right answer is. I'm not sure there is a single, right answer, for me or for anyone else. 



Laurie said...

Um, I am in such a bubble of crazy (work, book, baby, illness) right now I didn't post about Invisible Illness week at all, and I usually do a lot for it. Oops.

Just wanted to pop in and say hello, and say that I totally hear you. No one really sees me when I am bad, because I am too bad to leave the house, or am in the hospital. They only see me at my best, so often I have people tell me they forget I have illnesses. Even people who know me well, and have read the book, etc. It's a blessing at times, and a pain at others.

Anonymous said...

Thank you, thank you!! This is something I've been feeling and couldn't put it into words. My auto accident not only has left me with CF, and other invisible chronic pain and illnesses, but also, short term memory problem from the severe concussion. I also have trouble with aphasia...and keep quiet when having trouble. So many haven't a clue..... My dear friend has said this a few time in the past year....and it breaks my heart every time. And it makes me clam up a little more each time. Sometimes, I am so tired of wearing my mask, that it's to wearisome to go anywhere. Trying to be happy and upbeat isn't easy, but I don't want to be a hard person to be around, and one that makes people run when they see me!!
I really appreciate you putting this into words and hope you don't mind if I put this on my FaceBook with your blog. I have to use others words to express mine.
Thank you, my friend at heart.