Living in a World Apart

We spent our Saturday immersed in soccer activities. Each of our sons played in their last games (3 hours on the chilly sidelines for me), and we went to an end-of-season bonfire party Saturday evening. Too much for me, of course, and I felt rotten on Sunday, but the boys both handled the heavy exertion well.

I found myself focusing more on emotional impacts, rather than the obvious and expected physical effects, though. Spending the entire day with a large group of casual acquaintances reminded me that we live in a different world. I was surrounded by people most of the day but felt very alone. It's like living in an alternate, invisible universe.

For starters, at both the games and the bonfire, most people were standing around, talking, while I had to sit. It's a small thing, but it separated me from the other parents. At the games, I wondered if they thought I was shy or even stuck-up because I wasn't standing with them and talking. I have always enjoyed social gatherings - used to be something of a party animal, in fact - and it still feels strange not to be at the center of the fun.

When someone did sit next to me and I tried to engage in conversation, I found that it was pretty one-sided. When someone I don't know well says, "How have you been?", the only appropriate answer is just to smile and say, "fine." Even with a Mom that I know better (and who knows of our health issues), I didn't want to bore her or scare her away. If I'm honest and talk about our daily challenges - and even our successes - she looks at me with pity and doesn't know what to say. So, I keep it light and positive and shallow.

When I manage to include myself in a group conversation, there's so much that sets me apart. Other parents ask what sports our boys are playing this winter. How can I explain that we're relieved to have made it through one sports season and can't manage any more? Two friends told us about a family summer camp they go to every year, saying, "You guys should come. You'd love it!" How can we explain that an action-filled week like that is completely impossible for us? Everyone is drinking beer and talking about how last year's bonfire party lasted past midnight. How do we explain that our boys need to go to bed before 9, even on weekends?

The answer, of course, is that you don't explain all these things. It's impossible for people leading normal lives to understand how different our life is. To try to explain would only alienate them and make them pity us. So, we just smile and keep our mouths shut. By the end of the night, I felt as if I hadn't honestly interacted with anyone. I've always been an upfront person - what you see is what you get - so this kind of superficial interaction feels false and unsatisfying to me.

This really is an invisible illness. Parties and other social gatherings that I used to enjoy just leave me feeling isolated and alone. I feel I have more in common with other CFS bloggers who I've never met in person than with the other parents in my own town. It's as if the world is now divided into two types of people: those who understand CFIDS and those who don't.

As Ken reminded me at bedtime, we have a wonderful life together with our two sons. We do a lot of great things together and have plenty of fun. I am quite satisfied with my life most of the time. I am grateful for our little family and the world we've created together, even with the shadow of CFIDS. My world has grown smaller, but I feel at home in this small world and blessed by the love of my small circle of friends and family who do understand.