If you're living with a chronic illness, you're in the right place.

Monday, January 14, 2013

Our First Tweetchat & Thoughts on Stigma

6:04 AM Posted by Tiffany Taft , , , , ,
Tomorrow, January 15th at 8:00 EST we'll be co-hosting a Tweetchat with the folks at Treatment Diaries.  In case you haven't heard of them, Treatment Diaries is an online community where people can write and share about their life with a chronic illness in an anonymous way.  It's a great website, so check it out if you haven't already.

Our Tweetchat is on your emotional and social life when living with a chronic illness.  We've written several blog entries on this, which we summarized some in our Treatment Diaries guest blog entry. So many things go into this and we only have 1 hour, but we think it will be a fruitful discussion, and we will learn so much from those who join in.  We hope to teach a few things while we're at it, too.

One topic we'll also be addressing is stigma toward those with chronic medical illnesses.  My doctoral dissertation was on stigma perceptions in people living with Inflammatory Bowel Disease, and I've done a few studies on stigma in Irritable Bowel Syndrome and comparing these 2 conditions.  They're all on Pubmed if you're interested in reading more.  When an illness is stigmatized, the person is treated as "less than" those who are deemed normal.  Erving Goffman was really a pioneer in studying stigma, something that has been around since people, and said this:

"While the stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others...and of a less desirable kind - in the extreme, a person who is quite thoroughly dangerous, bad, or weak. He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attribute is a stigma, especially when its discrediting effect is very extensive; sometimes called a failing, a shortcoming, a handicap.*"

Goffman goes on to compare the differences in stigma experiences in people who have openly visible traits that may be stigmatized and those whose condition may be invisible or concealable.  This is an important distinction for those living with chronic medical illnesses as many of these are invisible, so much so that there's an entire week dedicated to them.

When we have an invisible illness, we are discreditable (as Goffman put it). We must decide whether to disclose or not, when, and to whom.  We then run the risk of becoming discredited. So telling others about an illness can be like navigating a mine field.  But, we do know that 100% concealment of a chronic illness is more stressful, more detrimental to your health and well-being than telling someone.  So it's important to talk and share with those who are safe recipients of your story.  What you say and how much you say may vary from person to person, but it's important to talk.  Which is why sites like Treatment Diaries are important.  Advocacy groups like The Great Bowel Movement, Hibbs Lupus Trust, and the CURED Foundation are important.

Conversation about all aspects of life with chronic illness is where we should be focusing our attention as health care providers and patients.  I hope you're able to join us tomorrow evening for the Tweetchat.  Follow us on Twitter @OPBMed, @Treatdiaries, #treatdiarieschat.

*Erving Goffman, "Stigma: Notes on the Management of Spoiled Idenity.