We already know Crohn's disease can cause mental health problems, so why aren't we offered support?
A few weeks ago I read about some new research by the University of Manchester, which showed that young people in particular who struggled with their Crohn's and ulcerative colitis were more likely to experience poor mental health and need support.1
Those leading the study said: “Typically, consultations do not address young people’s feelings, mental health, or the challenges that these conditions can create for sustaining friendships and connectedness. While the focus on physical symptoms is important, our study reveals the importance of creating opportunities for talking about well-being and mental health.”1
However, as I read it, I couldn't help but think that this wasn't new information. A previous study in 2015 showed that those with IBD were twice as likely to struggle with anxiety when compared to the rest of the population.2
Why is mental health support not part of our treatment plan?
Although these studies are interesting and perhaps reassuring to those of us with IBD who know we're not alone it does ask the question: if we know this to be true, why isn't offering mental health support part of our treatment plan from the beginning?
Hands up if you've ever been asked about your mental health at a hospital appointment for your IBD?
I can't see you as I type this but I imagine not many of you have hands in the air.
What's the point of doing this important research if our doctors don't act on it?
Uncertainty around treatment and the impact on mental health
There are many things that impact my mental health and IBD-part of it is the uncertainty around treatment and medication.
Doctors do a very good job at explaining what our medication does and the side effects but no support is offered around this for our mental health. Whether that's due to fear of injecting ourselves, worry about getting seriously ill from medication, or even having to explain our treatment to friends, family, and employers.
Lack of trust towards providers
Other aspects are when we're diagnosed. I struggled for a long time to trust doctors after being diagnosed since I had been misdiagnosed for 12 years. Lots of us have anxiety around hospital appointments because of not feeling listened to or not being able to trust our medical team.
Part of this is around coming to terms with having a condition for life. Things can move very quickly from being told there's probably nothing wrong with you to having a colonoscopy and all of a sudden being handed leaflets, medication, and appointments. The shock of being diagnosed means that lots of patients (me included!) don't necessarily process their diagnosis immediately.
Thoughts and feelings after a Crohn's or colitis diagnosis
Without mental health support, it can take years to accept their diagnosis; meaning they may well turn to denial (refusing to take medication or not believing doctors), blame (wondering if it's something they've done), or anger (towards doctors or healthy people). We know these thoughts exist, so why don't doctors have these in mind when we're first diagnosed?
The hardships of life with IBD
And of course, all aspects of daily life can cause mental health issues too: from not being able to work to explain to our family and friends why we're exhausted or dashed out of a restaurant to go to the toilet.
We are starting to have more awareness around digestive conditions but we still have such a long way to go around understanding what it's like to live with IBD.
So, yes, these studies are useful, important, and necessary. But only if we act on them and start making mental health part of our appointments and treatments. Otherwise, they just become statistics and those of us with IBD deserve much more than that.
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?