What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Burnout in people with IBD

This week's #MondayNightIBD poll asked people with IBD for their personal experiences of burnout with Inflammatory Bowel Disease.

It's a great topic! I spent a good 10 minutes thinking about it and then responding, so I thought I'd upload my responses here.

What is your main cause of burnout?
Initially, I just carried on as normal. I was even proud of myself for being able to push through. Then, after a good few years, I just hit a wall. I spent 18+ months unable to do ANYTHING. Cooking went to shit. Cleaning didn’t happen. Showering was exhausting. I was too tired to even talk to people. I went to work because I HAD to pay bills, but I wasn’t on form there either. Physically and mentally I had nothing to work with.

How do you work through it?
I changed my career, so I now freelance and work to my own schedule. I literally live at a slower pace, and I plan anything social with a good few days in between to rest.

How can the Healthcare system help?
Maybe it’s simply a case of listening and communicating better with patients. Talking about what quality of life they want to achieve and discussing whether that’s realistic. If not, what is? Create a plan of action together.

What advice do you have for others?
For me, it’s literally just been a case of learning to listen to, and understand what my body/mind needs. Don’t scold yourself when you can’t do something, and don’t judge your life by what others can do, or are doing!

Part 2 focused more on advocates.

Have you experienced burnout as an advocate?
Of course. Sometimes, it just seems like there are too many battles to fight and not enough time and energy to do it.

Main cause & solutions?
Misinformation is a huge problem, but sometimes I don’t feel like I have the energy to type a response, call someone out on it, and deal with any backlash. I ALWAYS try to respond to the people who need support, and for me, that has to take priority over the rest. It can also feel really overwhelming when the people you have come to care about are unwell, and there’s nothing you can do to actually help. The only solution has been to keep reminding myself that I can’t be everybody’s, everything! The pressure I feel is usually just pressure I've put on myself!