Skip to main content

Our First Tweetchat & Thoughts on Stigma

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.

Popular posts from this blog

So You Have IBD During a Pandemic

Hey! What's going on? Been pretty boring over here in Chicago. Ok I don't need to elaborate on what the hell is going on in the world. We are being bombarded with information - some accurate, a lot inaccurate - about this pandemic. It's very easy to become completely overwhelmed by it all. We've been forced, pretty damn quickly, to completely overhaul our way of life for the greater good. To reduce the strain on our healthcare system of the sick and dying. And us humans are generally bad with rapid, monumental change that we really don't have a lot of say in. Our little reptilian brains do what they're supposed to do (prime us for fight or flight or freeze) but our advanced "thinking" parts of our brain have to interject with all sorts of unhelpful thoughts, thereby sending some of us off the rails. Before we start, turn off the news. Seriously. In the days following 9-11 we found people who consumed more 24-hour news channel information were mor

Psychosocial aspects of having an ostomy

This past Saturday, Tiffany and I had the honor of speaking at the United Ostomy Associations of America's Regional Midwest conference. I was assigned the task of speaking to the patients, and Tiffany addressed the partners or caregivers. I wanted to share with you some of the highlights from my talk. I only had an hour for my session, and with about 100 people in the room, it was not nearly enough time. I love bullet points, so here you go: We are all different! Every ostomate is different and not one size fits all for the emotional/mental aspect either. Who had months to talk about an ostomy and weigh pros/cons? Who was this a more sudden decision for? Who had cancer? Who had IBD? Something else? Who had an ileostomy? colostomy? urostomy? Who has a temporary? Permanent? Multiple temporaries? What age where you when you got your ostomy? Under 20, 20s, 30s, 40s, 50s, 60+ Who was single when they got their ostomy? With a serious partner when they had it? Some find a stom

IBD & Medical Trauma

Medical trauma is such an under-recognized issue for the chronnically ill. It's a hard topic to talk about because it can seem like we are pointing fingers at healthcare workers. Maybe that's why there are only, now, 4 studies on the topic in patients with inflammatory bowel disease (IBD). If you are someone who treats people with IBD please know I am not here to demonize or criticize. I am both a patient and a GI psychologist. I know the medical system from both sides. I know how messed up and broken it is. But ignoring this or rationalizing it away as only affecting a few folks is wrong. So let's talk about it. Post-traumatic stress (PTS) is the term we use for medical trauma due to technicalities in the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) for post-traumatic stress disorder (PTSD). PTS can be less severe that full on PTSD, or it can be full on PTSD. Regardless, the symptoms are identical: Feeling hypervigilant/on-edge (increased