Monday, November 06, 2006

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.


Mary Anne said...


I couldn't have said it better. I completely understand how you feel, the isolation and the wish to be honest but fearing that you will drive others away. I think it's a common emotional reaction and difficult to know how to handle. I have encountered this many times, even from relations.
I'm able to share with my husband, a few family members and some very dear friends. I am grateful for those who do care and try to understand. I just wish there was a way to let others know how difficult it is to get through every day.

Knittah said...

Yes! Sue, you express this so well! One of the things I said in an interview last week was that having CFS is like being under house arrest, but nobody knows. I have experienced everything you describe in this post. The disconnect between how we appear/ the social world and what our lives are actually like is one of the most difficult things for me. Even people who know me well do not truly understand how hard it is. Thanks for putting this so much better than I could!

Anonymous said...

i too understand exactly your feelings especially at social events like our sons golf presentation evenings. but i take the opposite approach and tell people how i feel and why. this is easier because i use a wheel chair which flags up the fact that there is something wrong with me.people then take me as they find me.



my first ever blog

Sue Jackson said...

Yes, Peter, I can see how the wheelchair might actually help in social situations. I said something like that to my husband Saturday night: that it's the invisibility of my illness that makes social gatherings especially difficult. It's different when you appear perfectly healthy. Then, telling people how difficult your life is just makes you seem like a whiner.

That said, I am very sorry to hear that your symptoms are bad enough to require a wheelchair. I know I am fortunate to be able to get around as well as I do and even to appear healthy.


Anonymous said...

Thank you Sue,

for expressing your feelings about wanting to be more social than you fear you appear to be, or physically feel you can be due to CFIDS. Yep, those of us with CFIDS are invisible! Yet we feel the differences inside ourselves, and can still remember who we once were. I was just trying to explain that difference to my very kind understanding (non-CFIDS) husband this week. He's so empathetic, but it's possible only those of us in an easily fatigued body know how it feels to want to do and be so much more in the world.

I'm new to searching for these CFS blogs. I know you said you feel you're between and in a divided world of those who understand CFS and those who don't, more easily understood by those who write about CFS. I'm just an anonymous voice.
But I want you to know that your expression and experience you're sharing with us is valuable.

Thank you for sharing it.

Anonymous said...

Dear Sue,
i am very impressed how good you are able to express what we all feel.
i am a mother with cfids and have a ten year old son with cfids.
you expressed so well what i feel daily and how hard this illness hits you, in ways others can never understand, untill you are ging through the same illness. i live at the other end of the world and it would be kind of nice if the boys could exchange some e-mails if you are intrested.
i am usually on a other message board under the name karinaxx,or is their a way to exchange e-mail

JustMe said...

What a great post. I can really relate. Only I take the opposite approach. I do explain, though briefly. At yes I do think it can and often does alienate people.

I guess for me the lesser of two evils is being honest about my situation and not censoring myself even if means people becoming uncomfortable. I am alienated from most healthy people anyway simply through my experience of being sick. I'd rather be open about that than to be silent about my reality. And alienation is the end result either way, so I'd rather be true to my situation and alienated than silent and alienated.

I see no reason as a sick person to go along and act as if I share the same daily reality as those who are well. I don't want to, through implicit agreement by being silent, act as if the reality some others may impose on me through their assumptions is the actual one I live.

You're right that most people can't really understand but I'm not comfortable just being silent about things either if someone is making false assumptions about my situation. I don't get into a long explanation, but I simply correct people if they make an assumption that's inaccurate or let the person know that the given situation is one that doesn't apply to me.

Sue Jackson said...

Just Me - Thanks for taking the time to comment. I think you misunderstood what I wrote in this post, though. I actually agree with you completely - I am always open and honest about my illness, for all the reasons you cite here. I agree wholeheartedly!

In the situation I was describing here, most of the people DID know about our illnesses because I have talked to them many times before about it. But, even in a group that knows you have CFS, you can still feel isolated and different in their midst. Unless you live with CFS, it is really impossible to understand how it impacts every single moment of every single day. When at a social occasion, with other people talking about sports, exercise, and other things that require far too much exertion for someone with CFS, you can feel left out even though you are among friends.

I am rarely silent (!) and am open with my friends, but I still feel alienated at times. I think we all do when out among "normal" people.

Thanks so much for starting such an interesting discussion!