Thursday, June 04, 2009

My Secret Life

I survived! I attended my board meeting on Tuesday, just like a real grown-up. By 3 pm when I left, I was totally wiped out. When I got on the train, I was so desperate to lie down that I curled up on the seats for a nap. I was pretty tired yesterday but not badly crashed. The muscles in my feet are still sore from wearing low heels (i.e. girly shoes)!

During the meeting,it occurred to me that no one at the crowded conference table knew about my illness. There used to be a few people on the board that knew me before I got CFS and knew how it had changed my life, but they have since retired or moved on.

One of my colleagues was asking me about another guy who used to be on the board with us. I mentioned that I had forwarded a consulting lead to him that I couldn't handle. He laughed and said, "Well, I'm sure you COULD have handled it, you just didn't want to, right?" I just sort of laughed and dropped it, but I was thinking, "No, I really couldn't handle even a single day of ordinary consulting work." By the end of the meeting, I could tell I was reaching the outer limits of my stamina.

It's so surreal to be among people who have no idea that I normally spend my days lying down with a laptop balanced on my lap or that I need a nap every day. It's like I have this secret life, and one day a year I pretend to be normal. It's especially strange to me because I've always been upfront about my illness and my limitations. It just hasn't come up in these once-a-year meetings since the new personnel took over.

I've written about this feeling before, in social situations, in Living in a World Apart and News From Planet Jackson. At this point, most people in my every day life know about my secret life, though I think that few people truly understand how different our lives really are.


  1. Wow, I haven't thought about it from this perspective. My life is so completely different that there is no one left who does not know about my illness on some level.

  2. Congratulations on surviving! I know what you mean about how strange it is to be so ill while being out in the world and no one knows...

    I hope you can get some good rest the next couple days.

    Oh, I meant to thank you for letting me know that the tilt table test will cause a crash. It's still not scheduled yet but I'll keep you posted.


  3. Hey Sue,

    Glad to hear you were able to attend a work meeting as I know you have been stressed about the lack of work lately.

    I think you are very right about this "Secret Life" that we are living. I think unless you are living with someone with this illness you just cannot imagine the way that we live. I think this is why it is so hard for people to understand, as when we go out we are at our best...

    At least you know there is a few others living on that different planet with you!!

  4. Glad to hear you made it! Are the boys still working to finish school?

    I guess that's exactly why they call it the "invisible illness." Tough.

  5. It must be strange to be among a group who do not really know about your illness ~ so glad it all went well for you and you made it home to rest again. People see us at our best and don't realize how we feel.....always looking as good as we do.:-)