The Mental Fatigue of Living with IBD

By Amanda Osowski

2 min read

When I first began experiencing symptoms of IBD, I was distraught. Not only was I sicker than sick, but I was fatigued in a way that I had never experienced before. A way that was impossible to explain to others. Some days, I was too tired to think, let alone move, act and do.

I went from being an extremely active 23-year-old to basically homebound in a very quick turn of events.

In the last 12 years, I fought my way to diagnosis, an adequate treatment plan for my Crohn’s disease, and remission, and yet, one thing has remained - the sometimes debilitating fatigue.

The constant mental load of IBD

Yes, Crohn’s disease or ulcerative colitis can cause some fatigue on its own, simply from disease activity impacting your body around the clock. But recently, I realized it was so much more.

The mental load of living with IBD can feel insurmountable.

The number of thoughts I have had in a given day related to my body, my health, my disease, my medication, my insurance, my healthcare, and my future take up so much of my brain space that sometimes I wonder how in the world I get other things done.

How I function as a person, work as a doula, mother my toddler, maintain friendships, practice self-care, run a household and a business – all while constantly weighing the pieces of my life (every piece of my life) impacted by Crohn's disease.

This, friends, is the invisible mental load of living with a chronic illness.

The fatigue of always considering our illness

And sadly, I know that I'm not the only one who carries this. Most patients struggle with the physical and often mental fatigue of living with IBD because our illness isn't something we can put away, put down, or skip thinking about.

My Crohn's disease has been well controlled for the last 3 years, and yet, it still factors into nearly every thought I have.

Here's just a brief example of the running narrative in my head:

Oh, that's my alarm. I'm still so tired. I was up 3 times to go to the bathroom last night, and I struggled to fall back asleep each time. I'm just going to hit the snooze button. Oh, wait, I have to go to the bathroom. Right now!
Okay. Phew. I feel a little relief. I'm just going to get dressed and head downstairs. Oh, I must be bloated because these pants are too tight. Er, well not tight, but uncomfortable. How frustrating. I guess I'll wear a dress today.
I'm hungry. But also nauseous. I'm going to eat a protein bar. That shouldn't hurt my stomach too much. I have early meetings today, so I don't have much time to be visibly uncomfortable.

Please note, I have all of those thoughts before 7 a.m. on any given day. Can you relate?

Our IBD makes us tired in more ways than one

Of course, there's a mental load of living with IBD. It's ridiculously clear, now that I spell it out.

Sharing this feels really important to me as a longtime IBD patient and advocate because I want you to know you're not alone.

The mental fatigue, the burnout, the emotional exhaustion of living with IBD – it's a lot to manage on top of your physical symptoms, and the rest of your life. I hope you know this community is here to support you each step of the way.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

BFrazier Member
Every time I hear or read someone else's story, I am so amazed at how many years went by without a diagnosis for most of us. That in itself is the real nightmare, at least it was for me. To top it all off I had bi-lateral Nerve Damage in my Colon, which was not told to me until over twenty plus years later, then I was put on disability without any real medication for IBD. I was told to eat this or not eat that, which was no help. I felt like I was put out to pasture to die. I lost so much weight I looked like a toothpick with limbs hanging on for dear life. I kept doing my own research to find out what to do, I finally took a free test of some type of Bio-stool sample and returned it in the mail to that company. The results noted I possibly had Chrons, Colitis, or both and to talk with my Doctors. Of course, they blew me off again as if this was just junk science they called it. Well after ten more years of suffering, and crawling on the bathroom floor due to being too weak after five hours of massive diarrhea to take a bath and get dressed. I would have to lay several large towels on the bath mat and go to sleep until I could get myself together. This went on for days, sometimes weeks until I just gave up and asked for a Colostomy, I could not feel when I needed to go anyway due to the nerve damage apparently from a past surgery from which I did not know damage had occurred. I guess they wanted to protect the doctor, and the patient is dammed. This is why I try to find as much humor in my Stoma Stories as I possibly can now because I have suffered for so long, the joy of being able to have a much better and massively improved lifestyle I simply get a kick out of the odd sounds and reactions I get from my Stoma, it is odd to have one, but it brings me so much less pain and discomfort than I previously suffered from, so please overlook me for finally having joy again and finding humor with my quirky little issues. Speaking on low energy, and severe fatigue, I'm still working on it, I think my new Vit-D3 5300IU, (my VitD levels are often critically low), and the Glutathione, for liver function, and Carb Neutralizer Patches will help. PS: They make really good Adult Pull-Up's, sounds funny as heck, but they are lifesavers during urgent times. 
1. Julie Marie Palumbo Moderator & Contributor
 Thank you for sharing, Beverly @BFrazier. You are a gem in this community and I can only hope that you continue to have success with your stoma and live a vital life. Thank you for being here! --Julie (Team Member)
2. Sahara Fleetwood-Beresford Moderator & Contributor
 <inline-mention username="BFrazier" user-id="4251792"/> yes, my initial surgery was an emergency too! I was 19, and I'd only been unwell for two weeks, but it came on basically overnight. It progressed that quickly that the surgery was the only option. It was 2007, so biologics weren't on the table as an option. I can't imagine being stuck in another country though! That must have been terribly scary for them! I do feel lucky in a sense that I didn't have to go through not being believed or taken seriously. A lot of people in the #IBDSuperHeroes group experienced similar. However, I have experienced this later on, even after having a diagnosis, so it's swings and roundabouts I guess. I too have had multiple surgeries (7 in total, 3 with a stoma as an outcome). I love the name Corky, and I love that you're life is so much better since having it! I am doing my best to live life. I do have fibro so it can be difficult, but low impact exercise helps. I have a garden to play in at home, my dogs and my partner, so I can't complain really! ~ Sahara (team member)

Community Poll

What topics are you interested in learning more about?