Where’s My Psychological Support?

I don’t know if it’s the same in the U.S., but here in the UK, people with inflammatory bowel disease often don’t get offered the mental health support they so desperately need.

Not dealing with the weight of my IBD

I have had a couple of periods throughout my journey where I really could have used some help with dealing with my emotions.

When I was diagnosed, a support group was suggested by my IBD nurse. At that time, I was not only dealing with the fact that I had ulcerative colitis, but also a stoma... But I wasn’t dealing with it.

I was ignoring it. I was pretending like it wasn’t happening. My head was well and truly in the sand, which is exactly where I wanted it! I had no intention of admitting that there was something wrong with me. Not to myself, and certainly not to a group of strangers.

That was it. That was the closest to mental health support that was ever mentioned by my IBD team.

Admitting I need support

It took me 7 years to admit to myself and others that my life wasn’t the same because of my disease. I had been through four surgeries and many flares during that time. I had put myself through so much as a byproduct of not admitting it.

I had pushed my body much more than I should have, in an effort to remain “normal”, and ultimately, I had to pay for that. And I did. I hit a wall of exhaustion, which left room for nothing in my life other than work and sleep.

Many, many times I’ve reached a point where I feel like I am on top of everything. Managing my life. Then a flare has started, or it’s been going for a long period of time, and suddenly, I feel like I am drowning again. Not managing day-to-day tasks. Completely overtaken by chronic fatigue, and overwhelmed by the realisation that I don’t have control over what my body does to me and when.

What's helped me cope

Lots of times, when I have needed to talk, I have actually withdrawn and isolated myself. Anxiety telling me not to try and open up to anyone because no one really cares. I often felt like I was the only person in the world going through it.

Online support groups have helped me so much with that feeling, but, I had to accept my disease before I joined any. Seven years went by before that happened and that makes me so sad. I often think that some counselling could have got me there sooner.

It was realising that so many other people had experienced the same lack of support that actually drove me to start blogging and sharing my journey more. It’s why my advocacy began!

Lack of psychological support from care team

Throughout all of my tough times, my IBD team has never once offered to refer me to a counselling service, despite me being open about how I am doing.

I wish the specialist team of people around me had suggested some actual counselling. Planted a seed. Kept watering it.

I feel let down that they didn’t.