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Thanks so much for an interesting post, especially about the ribbons. As the founder of Invisible Illness Week, we didn't do "ribbons" for years but people kept asking for them. We have "silver" but tend to do a lot of "white" stuff like the silicone bracelets (another fad) that say INVISIBLE ILLNESS - VISIBLE HOPE. Invisible Illness week actually has a "virtual conferene" with 20 interviews with all kinds of people who have invisible illnesses, to attorneys, etc. that all give seminars at - they are archived there and just as helpful and inspirational now as they were last Sept. We haven't picked this year's theme, yet, but it's always nice to have people feel like their illness is somewhat validated and how to live life, despite illness (that sounds so cliche even I hate saying it... but it's still true.)

We can't change the world--or people-- but there are days that it can be helpful to have an Invisible Illness Week bumper sticker on our car so when people give us that dirty look for parking in the blue spot (legally, of course...) we can just smile and even inform them, "oh, have you heard about invisible illness week? Did you know about 1 in 2 people live with a chronic illness, and most of the illnesses are completely invisible!"

Blessings to you,
Lisa Copen
(I'm posting our blog site in the space provided... we have articles, etc. year round on invisible illness topics.)

The upside of health problems is that health seems more precious as it's recovered after a bout of illness.

I say that in an 'there's an upside to everything' spirit --
without meaning to suggest that every upside justifies every downside.

It must be very difficult to live with recurring illness, and I don't mean to suggest otherwise.

Over the past week I've had a couple of dehabilitating health problems, and I happen to be at the point where I'm feeling like - 'hey, it's great to feel the life coming back into me.' (Earlier today I considered a putting in place a Facebook "status" message along those lines; I didn't end up typing such a "status" in though.)

Before long I'll probably be taking for granted my clearer head and all that. That complacency is unacceptable though, isn't it?

Maybe regular, vicarious exposure to illnesses would do me and many others some good. Perhaps that's a perverse thought, but here's a twist that could compensate for any exploitation -
actually helping someone who is struggling could make up for the sort of side-benefits of vicarious exposure to their difficulties.

Conversely, there are drawbacks to trying to shut out tangible illness, poverty, etc (in the comfort of a gated 'community,' for instance).

Sounds like you can't get away from illness though. Your relation to illness clearly is different from that of a lot of people (in this part of the world, at least); and clearly you're trying to come to terms with illness in your life.

My health generally is OK (aside from certain issues that I tend to be able to cope with). I can't get a whole range of ongoing crises and probable crises and possible crises (e.g. wars) off of my mind, but they're all very abstract from in this area of the world. A lot of people would say I'm just a malcontent whiner, and there's at least a little grain of truth to that, but those criticisms are largely unfair; I mean, some of us actually care about other people, for instance.

Anyway, I'm just rambling around one of your posts again.


Thanks, Lisa. I am sure that your work is very helpful for people - how many of us have heard, "...but you don't look sick"?!

I'm glad that you're feeling better, T.

There is definitely a silver lining to illness - it grounds you (literally at times) in the material world...

It has changed my relationship to academia and such pursuits dramatically - my brain is more of a meal ticket and less tied up with my ego than in the past.

I can't get a lot of things off of my mind either...some are abstract, but I also see coercion and control and oppression going on in immediate ways. Sometimes I wonder if some of the despair I feel manifests in my body. Who knows.

A final thought - I think that there are very few great caregivers who help without power issues emerging. I am lucky to have some great ones and I have no issue with them reaping any benefits of vicarious exposure. :)

People often talk about helping people in a zero-sum way -- in terms of time or effort that is 'given' to someone who is sick, for instance. Giving also can be gaining, at the same time, though.

Some people try to be selfish and then end up depriving themselves.

Community and sharing can be mutually beneficial.

(I'll just leave those thoughts at that vague, abstract level. And I'll also refer anyone who appreciates the gist of what I'm saying to Erich Fromm's books The Sane Society and To Have or to Be?)

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