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I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

In my bubble is the world of academic medicine, academic health psychology, and a circle of psychologists dedicated to people living with chronic digestive illness.  I live in Chicago, a major metropolitan area with multiple excellent hospitals with leading experts in their respective fields.  In my bubble is my IBD identity, and I've met some fantastic fellow patients via social media and at conferences.

I'd like to say I've been quite aware of my bubble for a while, but I wasn't.  It has only been the last couple of years where I realized "Damn, my bubble is REAL, yo." For example, I traveled last year to a city in Alabama to talk about IBD patient care with some clinicians and my bubble was very clearly in my face. Geography, urban versus rural, social norms, and even clinician knowledge about things that I assumed EVERYONE knew were things like gut-directed hypnotherapy. It all became very real and I had to step back and evaluate my perspective.

But I'd have to say my involvement on social media has helped the most with bubble clarity, if you will.

I just published my 34th peer reviewed paper and I'm kinda the most excited about it. It's on IBD patient experiences in the community (aka outside of my academic medicine and psychologists who love GI bubble).  While I can't C&P the whole thing here, I want to share the highlights.  I also want to share these findings with some quotes from people who responded to a recent poll I put on Twitter about their experiences with mental health treatment for their digestive disease.  67 people responded to the poll, with a mix of diagnoses but I think we can safely generalize them.  The quotes below are from the poll.

The research study had 162 IBD patients and we found:

70% agreed or strongly agreed that stress had an impact on IBD symptoms, 61% said IBD reduced quality of life, 54% said IBD impaired emotional well-being, 45% said IBD impaired their social life, and 17% reported experiencing stigma toward their IBD. 95% of IBD patients thought these issues should be discussed as part of their care.

It's a life changing illness and psychological support should be offered as routine.

While the vast majority of patients said they wanted these topics discussed, one quarter to one half of their physicians talked about them, ever.

In terms of being referred for mental health treatment for IBD, around half of our study group said they wanted to discuss this but only 17% of MDs talked about this specifically. Interestingly, primary care MDs / internists were more likely to talk mental health and its treatment than IBD specialists.

What does it take to have widespread mental health care or even approaching the subject? If you had a fever or infection it wouldn’t be such a secret & you would get care.

I begged to see a MH provider with tears in my eyes. Told the GI that incontinence had destroyed my life. If she couldn’t help, I needed MH care to learn to accept it. Result: nothing. Intractable fecal incontinence was, in her words, ‘not clinically significant.’

In the study, 39% of participants reported ever receiving therapy specifically for IBD.  So how does it actually go?

IBD patients said therapists' knowledge about various issues was rather low. The average rating was between 50 and 60 out of 100, so that'd be a D or an F if we were in school. 81% said there aren't enough therapists knowledgeable about IBD and this is a major barrier to seeking this type of care.

And the last therapist I picked randomly off my insurance carrier's list asked me why I couldn't just cure my IBD with kombucha like his cousin did. I know I need to keep trying to find someone, but it's discouraging. Like a series of terrible blind dates.

Roughly half of IBD patients reported benefits from therapy for IBD including stress reduction, improving quality of life and emotional well-being, and even improving IBD symptoms.  Patients with ulcerative colitis tended to report less improvement than Crohn's disease, but we're not sure why.

MH is part of the care plan. Not b/c the symptoms are ‘in their head’ but b/c dealing with a chronic condition puts you at a higher risk for anxiety and depression. They do a wonderful job normalizing MH conversations & offering options for MH support.

There were several barriers to accessing mental health care for IBD.  The most reported was the cost of therapy with 44% saying they had poor or no insurance coverage for seeing a therapist.

I brought it up to a primary care provider and he told me insurance companies do not allow doctors to make mental health referrals. I'm sure that can't be true; I've never thought to ask my GI doctor directly about it.

I wrote a lengthy blog on the topic of insurance coverage for mental health care so I won't get into it here.


Disclaimer:  The findings from my study and poll should be taken with caution.  These aren't large samples of patients, they were motivated to fill out my questions, and there are likely biases that are affecting the results.

While I kinda knew these things were happening out in the world, outside of my bubble, it was quite impactful to learn from both our study and the Twitter poll.  It's told me we have a LOT of work to do and patient engagement at every step is vital.

In the mean time, please know there are psychologists in the world who are paying attention and working tirelessly to help not only IBD patients, but those living with all of the chronic digestive diseases out there.  Stay tuned.


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