Tuesday, May 30, 2006

How Much Do You Tell?

Living with CFIDS, I frequently wonder who I should tell about our illnesses and how much I should say. There's a careful balance between telling the right people enough information so they'll understand what they need to without overwhelming them.

We had a wonderful treat this weekend when my closest childhood friend, Michelle, came to visit us from Ohio with her family. Michelle and I met when I was five years old and she was four, and we were inseparable all through our childhood and teens, even after her family moved out of our neighborhood. We've kept in touch as adults but only get to see each other about once a year, so we thoroughly enjoyed this weekend. Our kids had a blast together, and Ken and I had a great time talking and laughing with Michelle and her husband, Tom.

At one point, though, I began to worry that we were sharing too much about the challenges of our illnesses. That may sound silly since they're good friends and we talked in-depth about a lot of things, but I didn't want to bore them with details of our school battles or alienate them or make them feel sorry for us. A bit of empathy and understanding is always nice, but sometimes I see a look of pity in someone's eyes, and I know I've said too much. I guess there's also an underlying fear that if I talk about illness too much to my friends, I'll scare them away. It's not just paranoia; I did lose some friends when I first became ill.

On the other side of the coin, I was talking to the mom of one of Jamie's best friends yesterday at our local pool. I mentioned that Jamie was attending all 5 of his classes these last two weeks of school and was feeling really well lately. She said that she never realized he had an illness until recently. Jamie and Craig play with her son all the time, and I thought I had filled his parents in on Jamie's limitations from that very first sleep-over. I guess I didn't.

Certainly, I need to provide some information to parents of Jamie's friends if he's going to be at their houses, but how do you know how much to share? At our Mardi Gras party this winter, a friend asked how Jamie was doing, and I was happily sharing the news of his improvement on Florinef when I realized that some of our friends were listening with a look of mixed horror and pity. I thought it was great news that he could now attend three classes a day, but these other parents were obviously distressed to hear of the extent of his debilitation compared to their normal, healthy kids. And these were close friends.

Even harder, how much do you tell acquaintances? The parent of a not-so-close friend who's invited Jamie over to play, the members of my book club when I bring my own foot rest and have to leave our meetings early, other parents at school who look at me funny when I have to sit or put my feet up while they're rushing around helping, the kind neighbor who asks how I've been...what do you say?

Part of this conflict is also due to my fervent desire to help educate the general public about our often-misunderstood disease. I want people to understand that CFS is not some silly designation for wimpy people who feel a little tired, that it is a serious and debilitating illness that deserves serious research funding and respect from the medical community. The need to educate feels especially urgent when people say things like, "But you look great!" or "He always seems to have so much energy." I feel compelled to explain these seeming paradoxes and to tell skeptical doubters what our bad days are like.

So, I'm constantly trying to balance my need to explain and to educate against the fear that I'll drive away those closest to me. How much do you tell?


  1. Oh, so know what you mean!! That feeling of sharing too much when you get that look of pity. That feeling that maybe you haven't made it clear just how sick you are to a doctor or relative. And then when you end up in the ER and they ask if you have a serious illness, do I share that I have CFIDS and get labeled a hypochondriac or do I withhold that info and not have them make some connection that might help my overall illness? Such a difficult position.

    Great post. It's a big issue for all of us with this disease.

  2. I think most people never consider this when it comes to any issues our children our having. It's hard. Thank you for your thoughts. I am your neighbor at TBT linkup.

  3. There is a delicate balance with chronic illness, but I think it's best to share enough understanding of the illness with those that are part of your support system. If someone is not in my support system, then I don't feel the need to go in depth about my condition; however, I do like spreading the awareness of fibromyalgia and chronic pain, so I do lightly touch on the subject as the situation presents itself.

    Found your post at TBT linky party with Moms Small Victories!

  4. Thanks for sharing with Throwback Thursday. I know what you mean it's hard to find that balance. I think i struggle with that most with people that are closest to me. I can share my struggle with strangers (especially on the blog or with those I visit) but when I see the fear and concern in my loved ones' eyes, it kills me. Of course your situation is different since your kids have chronic illnesses too. Hope you link up with us again this week.