Living With Crohn's Disease/IBD? Your Mental Health Matters Too.

by Alyssa

For as long as I can remember, I’ve struggled with anxiety. It had been fairly minor as a kid, but really ramped up when I got to my final year of high school. There’s already a ton of pressure put on you at that time – you’re made to believe that the rest of your life will be determined by a set of exams and your whole worth as a person comes down to how well you do. I was so terrified of disappointing anyone or not getting the marks for admission into the university courses I wanted that I started having panic attacks, mood swings, and really intense stomach cramps. I think it was probably at this point when I actually started to experience the beginning of what would become a diagnosis of Crohn’s disease five years later.

The signs were there if you knew what you were looking at: really low iron, weight loss, and debilitating stomach cramps that would hit at all times of the day. I went to a GP about it, but it was put down to stress. I really believed that once the exams were over and I’d managed to achieve what I’d set out to, it would all get better. Perhaps unsurprisingly, it didn’t. I had the same problems at university. I kept the same pressure on myself at all times. If I didn’t get the grade I hoped for on a big assignment, I would cry until I vomited. It just wasn’t sustainable, so I reached out for help, still in the mindset that it was just stress and anxiety and if I fixed my brain, my body would get better.

At the medical center on campus, I was linked with a mental health nurse, and with his help, I did make some progress. I was finally diagnosed with anxiety and depression. It did feel good to have a name for it, but at the same time, the roots of Crohn’s disease had sprouted in my body and were flourishing. By my final year of university, I was so sick with it that I could barely walk, had lost a huge amount of weight, and was struggling to keep any food in. My anxiety shot up again. I was trapped in a body that was failing me and I had no idea what was wrong with me. I genuinely thought I was going to die at the age of 21 when I barely felt I’d lived.

Until I received the Crohn’s diagnosis in the January of the next year, there was nothing anyone could do to make my fear smaller. And then, of course, finding out I had an incurable disease just made it all worse. I spiraled, letting my anxious thoughts run away with me completely. Things only really started to change when I got up the courage to join some online groups for IBD. It probably sounds strange, but having people I’d never met from all over the world understand exactly what I was going through was so comforting. It also meant that there were others awake in the U.S. or the U.K. when I was stuck in the bathroom at 3 a.m. Just having someone to talk to during the low points was incredible.

When I was ready to talk about it, I started going in person to the support groups and making friends with fellow Crohnies in my city. For a bit of further help, I tried to see a few different psychologists at that time, but I just didn’t click with them for one reason or another. I’ve found that that’s quite common and that it’s actually perfectly OK to break up with your therapist (or your specialist, for that matter). I met my current psych at an IBD conference. He was associated with a gastro clinic and had experience working with pain management for chronic diseases. After hearing him speak about the importance of providing mental health support to people with IBD, I sought him out and later went through my GP to make sure I got a referral to see him. Having a psych who understands Crohn’s and all it involves has meant that we can work specifically on those areas of difficulty for me. I’ve developed so many coping strategies and feel more prepared to take on whatever Crohn’s throws at me in the future.

It’s been an absolute game changer and I can’t emphasize enough how important it is to keep tabs on your mental health when you’re dealing with a tricky beast like IBD. While therapy isn’t for everyone, there are so many other ways to get that support. The amazing women at Girls With Guts are a great starting point. Join groups and find ways to talk about how IBD impacts your life. The kindness of strangers across the world has meant that I’m held up during the hard times and have people who celebrate with me during the good times. Through trial and error, I’ve managed to find the combination of things that makes the weight of chronic illness a little bit lighter for me personally.

You don’t have to do this on your own. It’s not only stress or anxiety and it’s not just in your head. Everything you feel while on this journey through chronic illness is legitimate and normal. The first step to improving my mental health was to realize those things. Look after you in whatever way you know how. You’ve got this.