The other day, someone who follows me on Twitter used the adjective “pushy” to describe my messages on the topic of mental heath and chronic digestive disease, specifically inflammatory bowel disease. I’m not going to out this person, because quite honestly I can’t remember his name. But I do remember where he works and what he does and let’s just say he’s not an outsider to the world of IBD medicine. At the time I laughed off the comment but as I reflect on the broader picture of my work and the work of my psychology colleagues and the patient advocates and anyone else attempting to bring some attention to the immense struggle that is life with IBD I’ve landed at a different emotion: anger.
I started in what is now called the field of Psychogastroenterology in 2005. The year Weezer put out the song most of us Gen X types cringe at, “Beverly Hills.” Let that sink in. I’ve been in this space for 15 fucking years. I wrote my doctoral dissertation on stigma perceptions among patients with IBD, and as I crossed the stage to get my hood someone in the audience made a farting sound. I don’t know if that was an attempt at irony but I would bet someone who makes a farting sound in the middle of the Lyric Opera House in Chicago, where the ceremony was held, lacks the mental sophistication required for irony. Like Alanis Morrissette. Herein started my career in IBD psychology.
Over the last 15 years I’ve watched the topic of stress and mental health in IBD evolve from a dismissed, even laughable topic to one that is now, what I’d call, considered. And that’s progress, believe me. Part of me is breathing a sigh of relief and thinks FINALLY. Much of why mental health in IBD is considered is because of tireless patient advocates on social media. Telling their stories, providing a comfortable place for others to share theirs. Using words like suicide and hopelessness and eating disorder. Cutting away the bullshit of statistics on “anxiety and depression” that, while important to measure and know, are so parroted at this point I can’t even stand to hear them.
The fact is, very few people really want to get into the weeds of IBD and mental health. Those working in IBD do want people to perceive that they care and they get it, but there is no depth of understanding or appreciation. It’s a box to be checked. Until that depth is present, it’s all just fucking fluff.
Cut to side glance: Sure, I’ve considered what writing this down on the internet might do to my “career” and who I might piss off and I truly couldn’t give a shit. I would hope my anger would give people pause to think about what exactly we’re doing here. And not get defensive. This is a systemic issue - perpetuated by some and genuinely fought against by others (I see you). Regardless, I’ll open a taco truck that offers brief CBT with every order and call it a day. Because I’ve already walked away from an entire career once after I was diagnosed with Crohn’s in 2002. Monumental change is not scary to me in the slightest. One benefit of IBD, hey hey!
Cuts back: Another person recently used the term “fluff” to describe how mental health topics are presented at medical conferences. Unprompted by me, I swear. Maybe it was my vibe during our conversation that made this person feel like they could share similar sentiments with me. It was so jarring and exhilarating to hear. Because even salty bitches like me do pause and consider if we’re too far outside the groupthink and making too many waves or being too forward in our opinions.
You know, pushy.
When I go into my professional spaces, like conferences for example, I do not openly disclose my patient status but because colleagues follow me on Twitter, some know. I’m sure with some people that fact degrades my expertise as a psychologist with over 35 peer reviewed publications and hundreds of conference abstracts (because that’s where psych research goes at medical conferences, poster presentations) and co-Investigator on an $8 million NIH funded grant. Instead, I’m just a patient who’s biased and maybe makes them a bit uncomfortable being in their part of the sandbox. Because I look at their data through the eyes of a scientist and a patient and I know the nuance of living with IBD they’ll never capture in a PowerPoint. And I see the glaring lack of true integration of mental health into patient care discussions over and over and over again. And I’m sick of it.
I don’t have the answers to this. Change is happening but at an excruciatingly slow pace. I’m taking a step back to evaluate how I can be more effectual in helping my fellow patients with IBD and other digestive diseases. What I’m doing isn’t working at certain levels and honestly I’m not sure it matters for it to work at those levels any more. Part of me wonders if my participation has actually impeded meaningful change in the mental health in IBD space. The topic is given a seat at the table but to the side, keeping it rather forgettable and certainly avoidable. But if anyone asks, hey it was there.
I’m tired of feeling frustrated. I’m not going anywhere, don’t get me wrong. But 2020 is a year of change and refocusing my energy where it really matters. If you have ideas, let’s talk.
Twitter @DrTiffTaft
Over the last 15 years I’ve watched the topic of stress and mental health in IBD evolve from a dismissed, even laughable topic to one that is now, what I’d call, considered. And that’s progress, believe me. Part of me is breathing a sigh of relief and thinks FINALLY. Much of why mental health in IBD is considered is because of tireless patient advocates on social media. Telling their stories, providing a comfortable place for others to share theirs. Using words like suicide and hopelessness and eating disorder. Cutting away the bullshit of statistics on “anxiety and depression” that, while important to measure and know, are so parroted at this point I can’t even stand to hear them.
The fact is, very few people really want to get into the weeds of IBD and mental health. Those working in IBD do want people to perceive that they care and they get it, but there is no depth of understanding or appreciation. It’s a box to be checked. Until that depth is present, it’s all just fucking fluff.
Cut to side glance: Sure, I’ve considered what writing this down on the internet might do to my “career” and who I might piss off and I truly couldn’t give a shit. I would hope my anger would give people pause to think about what exactly we’re doing here. And not get defensive. This is a systemic issue - perpetuated by some and genuinely fought against by others (I see you). Regardless, I’ll open a taco truck that offers brief CBT with every order and call it a day. Because I’ve already walked away from an entire career once after I was diagnosed with Crohn’s in 2002. Monumental change is not scary to me in the slightest. One benefit of IBD, hey hey!
Cuts back: Another person recently used the term “fluff” to describe how mental health topics are presented at medical conferences. Unprompted by me, I swear. Maybe it was my vibe during our conversation that made this person feel like they could share similar sentiments with me. It was so jarring and exhilarating to hear. Because even salty bitches like me do pause and consider if we’re too far outside the groupthink and making too many waves or being too forward in our opinions.
You know, pushy.
When I go into my professional spaces, like conferences for example, I do not openly disclose my patient status but because colleagues follow me on Twitter, some know. I’m sure with some people that fact degrades my expertise as a psychologist with over 35 peer reviewed publications and hundreds of conference abstracts (because that’s where psych research goes at medical conferences, poster presentations) and co-Investigator on an $8 million NIH funded grant. Instead, I’m just a patient who’s biased and maybe makes them a bit uncomfortable being in their part of the sandbox. Because I look at their data through the eyes of a scientist and a patient and I know the nuance of living with IBD they’ll never capture in a PowerPoint. And I see the glaring lack of true integration of mental health into patient care discussions over and over and over again. And I’m sick of it.
I don’t have the answers to this. Change is happening but at an excruciatingly slow pace. I’m taking a step back to evaluate how I can be more effectual in helping my fellow patients with IBD and other digestive diseases. What I’m doing isn’t working at certain levels and honestly I’m not sure it matters for it to work at those levels any more. Part of me wonders if my participation has actually impeded meaningful change in the mental health in IBD space. The topic is given a seat at the table but to the side, keeping it rather forgettable and certainly avoidable. But if anyone asks, hey it was there.
I’m tired of feeling frustrated. I’m not going anywhere, don’t get me wrong. But 2020 is a year of change and refocusing my energy where it really matters. If you have ideas, let’s talk.
Twitter @DrTiffTaft