Carrying Crohn's is Heavy
Last updated: October 2022
I recently wrote about how the mental load of living with an invisible illness (in my case, Crohn's disease) can get extremely heavy and even very lonely over time. I shared that while I advocate for this illness and for IBD patients like me, I find myself often keeping the mental and emotional burdens to myself.
This isn't because I don't know how to articulate them, or because I feel like they aren't valid. It's honestly because I've learned that in reality, those who haven't struggled with their health simply cannot understand what it's like to live a life like ours.
The psychological impact of Crohn's
I am 12+ years into my battle with Crohn's disease. And while I've spent the last 3 years in remission, I've had a lot of time to process the way that my brain and my thought processes have changed since getting sick.
To me, the necessity of mental healthcare for chronically ill individuals is more clear now than ever before.
Trying to be "normal"
As a patient who takes 2 handfuls of pills each day, along with interim as-needed pills along the way, who gets regular infusions every 5 weeks, and who can't make a single decision without thinking about Crohn's disease, I get what it's like to live in fear, to live in pain, to live in physical agony on the regular. I get what it's like to try to mask that, at some times or at all times, in order to appear – or even try to feel – more "normal" when interacting with others.
So much pain
I also understand what it's like to have an extremely high pain tolerance. To reach a critical level before feeling like I absolutely need some help. Some breakthrough medication. Some support. Some love. Some friendship.
And recently, I've realized that it can make it dangerous to wait so long, to try so hard on my own – because at that critical mass point, I often feel like the damage might be too far beyond repair. That the medication or the support that I need is not strong enough to fix me. That I have let myself fracture into too many small pieces to be collected off the sidewalk and reassembled again.
Crohn's & colitis affect body and mind
Taking care of myself – of my whole body living with Crohn's disease – it far exceeds the way I treat my gut and the recommendations from my gastroenterologist.
It has to include the way my mind works, the way my emotions work, the support and recommendations from my therapist and my psychiatrist, and the medication I take to even out the chemicals in my brain. It has to be a full body, comprehensive care model – because what is a body in remission with a mind in hell?
Living with IBD means paying extra attention to and caring extra for my body, my brain, and my heart.
It takes so much work – physical and psychological
For me, specifically, I've learned that it requires a lot of pieces, and a lot of extra, continual work. I've learned that it's exhausting, and much like the physical symptoms of Crohn's can be invisible at times, the mental and emotional load I carry alongside it is often also invisible too.
I've learned that it doesn't matter to the outside world how much I'm carrying or how heavy it is, but it absolutely does matter to me. And allowing myself to forget that I'm carrying it can overall be such a disadvantage – forgetting that your "normal" isn't normal forces you to lose much-needed perspective. And ultimately, that can be dangerous.
How do you carry your IBD?
Have you thought about the mental load of living with IBD? What about how that mental load impacts your physical body, and your interpersonal relationships? Who or what supports you with carrying the emotional challenges of IBD? I'd love to read your comments below.
What has been the most helpful for managing IBD symptoms?