I saw a post on Instagram recently that said “Chronic illness is just as much a mental battle as a physical one.” I wish this was something the chronic illness community could easily convey to others, but it just isn’t that easy. Only when you are faced with the challenges a chronically ill person faces will you truly begin to understand the effort it takes to keep going each day. As we close out Crohn’s and Colitis Awareness Week, I hope to debunk some misconceptions that IBD only affects the gut.
Truth is, IBD affects EVERY SINGLE ASPECT of my life. It is hard to explain, but even when I am not facing symptoms, I am thinking about my illness. I can forget about it for a little while if I’m occupied, but the fear and worry never goes away. I am constantly asking myself questions like:
- What can I eat that won’t upset my colon?
- Will my medications be covered and/or get approved by my insurance?
- Will I have to go without medication due to delays?
- Will it ever come back in a serious flare?
- Will I have to change my treatment plan?
- When is my next doctor appointment?
- Will I have anxiety about leaving the house?
The list goes on and on. I’m sure many of you reading this don’t even have to ask yourself these questions. To that I say, you should consider yourself lucky! I often find that I grieve the loss of my healthy life. Sometimes I wish my life went back to the way it was before I was diagnosed, because things were easier and I wasn’t being forced to grow up. Coming to terms with a new identity is hard at first, but over time it gets easier because you find hole-in-the-wall opportunities that otherwise would not have been there.
When I was first diagnosed with ulcerative colitis in 2019, I thought if I just got it under control I wouldn’t have to worry about it anymore. That was a complete lie. No one can really prepare you for what comes after being diagnosed with an illness that has no cure. They don’t tell you that even when you feel better, you’ll still have to deal with the consequences of being sick. Each day is truly a battle, but I’m working on staying present in the moment and not worrying about the things I cannot control.
To those who do not have a chronic illness – all I ask is that you show respect and be open to understanding this disease by educating yourself. All I have ever wanted from friends and family is respect for the decisions I make as a result of how my body feels. I function in a no-judgement zone and I expect the same in return. Even trying to find a significant other has been extremely difficult for me, because I fear I won’t be able to find someone who will let me put my health first. My own battery needs to be charged too and if I don’t have the means to charge it, then I won’t be able to offer the best of myself to someone who really deserves it.
I have always been a huge proponent of asking questions. I will not cringe if you ask me a question about my disease. In fact, I will be so happy you asked and gladly share my experiences with you. Interest like this tells me that you care and want to learn how to best support someone with chronic illness. My community means everything to me and I need people who are willing to fight on my team, because I cannot nor do I want to do it alone.
IBD affects more than just the gut. If I could give you a glimpse into my daily life, I think you would understand how difficult it can be even when not showing symptoms. My one goal through this blog has been to spread awareness of not only IBD, but other chronic illnesses as well. It is important to be there for the ones around you who may not be feeling well, check in with them to see how they are doing, respect their decisions, and educate yourself on their disease. Chronic illness is just as much a mental battle as a physical one. What you see on the outside isn’t always how we feel on the inside.
How will you support someone with chronic illness?