Among my chronically il friends, we can laugh and give one another a hug and say, “You look so good though!” because… frankly… it’s true! And I think you’ll find that as one grows emotionally the comments people say slip off of us a little easier. At the beginning of your diagnosis “You look great” can be much more heart-breaking than after you’ve lived with illness fifteen or twenty years.

But as the founder of Invisible Illness Week and was the one who conducted the survey, my goal for for this week is to (1) provide resources such as our 20 online chat seminars to increase people’s understanding of the issues they face, both emotionally as well as practically and (2) to educate those who are healthy the best ways to respond to the chronically ill, in order to truly be able to reach them. By knowing what to say or not say, one can knock down walls or stop sending up red flags when speaking to a chronically ill person. This can really open up the possibilty of having a much better relationshp, whether it’s just between friends or in a sutation such as a co-worker.

The next press release will be about how people would love to have others respond (such as “how are you REALLY?”) I think one of the best things we can do is increase communication between the chronically ill community and those who are healthy. For example, my ministry, Rest Ministries, specifically works with churches to help them better understand the life of those with chronic conditions so that they can communicate their intentions into language which those with chronic illness will be receptive to, rather than run from.

But I’ve also written books that teach people that no one is responsible for their feelings but themselves, such as “Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why?” My point is, that although I desire for healthy people to better understand and respond appropriately to the chronically ill, I also try to educate people who are chronically ill to look beyond their illness and themselves and reach out to others. communicate their needs, have reasonable expectations and live life as normal as possible, despite the daily challenges.

I hope this explains my intentions and reasons for this particular survey. And that just over half responded that they wouldn’t want to be told they looked great. The other forty-something percent said it was another comment they’d prefer not to be told. It’s alll just a way for us (National Invisible Chronic Illness Awareness Week) to be able to educate the public —and maybe even decrease the number of chronically ill people who have to deal with all those stares when you legally park in a handicapped spot.

Rosalind