The Grief of IBD

No one really talks about the grief that chronic illness patients experience. Having a chronic illness is not always about dealing with the symptoms. It is largely about understanding and accepting feelings of loss, helplessness, and uncertainty. I have had a tough few weeks and I saw these posts on social media recently that helped describe how I was feeling.

I have a lot going on in my life at the moment – most of it good, but some of it bad. I feel an extreme sense of overwhelm and dread to face each day because of not knowing what may be coming next. I am a planner and I like to be prepared, but living with a chronic illness does not allow that. I have to remind myself that situations are only temporary and how I react to it will ultimately determine my fate.

When I get overwhelmed, I get stressed. And stress takes a negative toll on my body and causes a flare. Then I get stressed about being stressed and it’s only a vicious cycle from there. Once I am in the cycle, it’s hard to get out. I get a little stubborn when it comes to reaching out for help, but a good pep talk always helps – whether I want it or not.

I feel the mental and emotional tolls of having IBD on a daily basis – even when I am feeling good and not experiencing symptoms. The amount of time I spend worrying about my disease and what the future holds is incomparable to anything else I think about. I think about what life would be like if I was never diagnosed with IBD, if I was able to pursue the things I love without being held back, and what else I would worry about if IBD did not exist. The “what if’s” in life are dangerous.

I realize that I suffer from anxiety and it largely stems from my disease. Research shows that up to 40% of IBD patients suffer from anxiety or depression. Some days I want to lock myself up in my house and stay in bed all day, because facing the world takes too much of my energy. I am really good at putting on a brave face each day, but on the inside I am struggling to bridge the gap between who I am and who I want to be. I expend so much of my energy outwards trying to make other people happy that I forget to leave some energy for myself. The grief and anxiety swallows me whole.

If it wasn’t for my friends and family who reach out when they know I am struggling, I would not have hope. It is easy to isolate yourself when you feel down and reject help, but it’s okay to ask and be vulnerable. We are only human – we were not designed to be perfect. Please check on your friends and family frequently. You never know if they are struggling inside.

IBD, or any chronic illness for that matter, is something I do not wish on anyone. It’s a very difficult journey to navigate and it does not just start when you are diagnosed. I want more people to be aware of how these chronic illnesses affect us and how meaningful it is to have conversations about this. We need to remove the stigma around these types of conversations and show each other and ourselves a little grace once in a while.

Cheers to moving forward with a strong heart, mind, and body.