To Tell, or Not to Tell: A Tale of Secret Identities

I finally made it to one of my local FM Support Group's meetings. I'm happy to report it was a very GOOD experience. Despite getting lost, hitting traffic, taking a wrong turn, and thinking I was lost when I wasn't,all on the way there! (This too, is a new thing. Pre-FM, I was like a Human GPS. I've actually had people close to me get upset with me because I couldn't give them directions; they sincerely believed I was yanking their chains!) Once I got there, late I might add, I was greeted at the door, hooked up with a nice little packet of info, and made to feel very welcome. There was a nice guest speaker on the subject of stress management, and though my attention span was a bit shot, I definitely got something out of the nice semi-guided Meditation/Relaxation at the end. I even got some goodies! A great calendar, and some issues of FM Aware magazine, which I've been hoping to fit into my budget for ages now.

Afterwards, I was approached by some very nice group members, and we struck up a conversation. There's something about being amongst fellow FM patients that just makes you feel safe and let your guard down. I guess it's because so many of us spend most of our lives trying to pass as normal, healthy people, especially those of us in our 20's & 30s. This is what I've been struggling with, especially since I moved to Orange County. It can be hard work, and very confusing at times, especially if you're the type of person to whom lying, even telling white lies, doesn't come naturally. And even if you are the type of person who isn't that scrupulous, Fibro Fog can really get in the way of keeping your story straight anytime you DO fib.even a little!

So I was talking with someone, and this subject actually came up. They mentioned that they were terrified of letting people in their line of work know about their condition, and I totally understood. At my last full-time job, I didn't even mention it. Even when the owner of my company noticed the unusual slowness and stiffness with which I got up off the floor after helping him hunt down some paperwork, I was vague and played it down. (It turned out his daughter had a similar condition, so I might have done myself a favor by admitting what was wrong. Hindsight...)
And my boss, who I ended up sharing an office with, and was quite close with, didn't know, until the very end, by which time everyone was more than a little confused and concerned by my memory problems, lack of energy, and plummeting work performance, and I had no choice left but to explain.

Social life is another place where things get complicated. If you can pull of working, it's not so hard. But what does one say when Fibromyalgia and/or CFS keeps them from working? The inevitable question in social situations always seems to be
"So what do YOU do?"

Most people I know did not grow up with FM or CFS. For me, it hit in my early 20s, and by then I had a very set image of my future. I wanted to be a career woman, be fabulously successful. I believed that if you just tried hard enough, were smart, worked hard, and had goals, it was all there for the taking, and that was the plan. And as for my ideal mate? I wanted someone who fit that description as well. A relationship of equals filled with mutual admiration. At least, that was how the fantasy was supposed to go...

Therefore, trying to figure out who I was without a job was one of my hardest obstacles to tackle. So I kept going back to work, making myself sicker again, and having to quit,take time off until I couldn't stand not being in control of that aspect of my life, and found myself another job I was destined to fail at once it took its toll on my health. Then I finally came to the conclusion that I was banging my head against a brick wall, and that I had to create a life were there was more to its quality and my happiness than working. It was hard work, but I managed. Slowly but surely, I started to feel like a normal person again, part of the world.

And then I had to move, and leave everything behind.

So here I am again.

Laurie Edwards, in her book Getting Real About Chronic Illness in Your Twenties and Thirties tells of how one of her friends had a similar problem finding her identity after having to quit working, and her therapist told her something very interesting:

"Your life will now become about your relationships with others."

How true.


So here I am, having to start all over from scratch, it seems. And when you meet normal (i.e., healthy) people, it's really hard, first of all, to decide what to tell them, without totally lying. It can be very stressful just trying to decide what to do, and this on top of making the effort to put yourself out there. Also, if you don't tell them about your situation, then you have to work even harder to keep up the appearance of being a normal, healthy, young adult. (Making the painful decision of whether or not to use your handicapped placard if parking is too far, or risking being seen and found out, for example. Or having new friends think you're a flake for canceling at the last minute. Trying to hide the fact that you're utterly broke...) You have to ask yourself, at a certain point, if it's all worth it. After all, do you really want people in your life who aren't able to accept you as you are?
Is it worth the trouble, with everything else being as challenging as it is?

Of course, if you come clean, that takes some finesse as well. You risk rejection, which could lead to discouragemnt and further isolation. Plus, you have to decide how much information is too much.

In another book I read recently, Living with Fibromyalgia, the author suggests that if you are afraid to let people see that you're ill (which I personally have issues with, I totally panic if I'm in a situation where my illness interferes with my functioning, and I'm around anyone but immediate family or close friends, or not in control of the situation)then you haven't yet really accepted your illness. How's that for something to ponder? I thought it was very interesting indeed. It's funny, I've had near melt-downs over having to be around even extended family members when I was having a flare...yet I have no problem telling them about it! So maybe they were right...I do sometimes feel like I've been busy crusading, trying to get everyone to understand FM, yet on some level, I hadn't fully accepted it myself... not fully...

So, the waters can get pretty murky at this point.
Me, I'm still trying to figure out where the balance is for me.

But for now, it's nice to have those special people in my life, who understand exactly where I'm coming from, and accept me for who I am. Here's to you, my Fibro-Friends!
You are my heroes. Thanks for being there.