The Mighty Logo

Yes, I Grieve My Life With Ulcerative Colitis and Here’s Why

Grief is often associated with a loss of a loved one. Or maybe when you think of grief, the horrible news cycle comes to mind. It’s hard to ignore all the upsetting things happening around our world right now, and much of it does call for a grieving period for many people. After all, the very definition of the word grief is “deep sorrow, especially that caused by someone’s death.” I don’t know about you, but I don’t know a single person that isn’t experiencing some form of sorrow these days. 

So why is it, when it comes to grieving life with a chronic condition like inflammatory bowel disease (IBD), we don’t really talk about it? Why does it constantly take my therapist reminding me that I need to grieve XYZ for me to actually remember to honor that emotion? Is it taboo? Does it feel too ‘dramatic’ to grieve something like a sickness? Some may argue yes; I know I used to. I didn’t know my ulcerative colitis (UC) was worthy of a grief period … er, an ongoing cycle of grief. In fact, I didn’t even consider it until a few years ago, when an encounter with a very wise life coach told me I was “spiritually bypassing” some emotions around my UC that needed to be addressed. 

Um, what? 

In short, I was ignoring the fact that “losing” my body to UC was something worth grieving. Not only was it worth grieving, but it was also necessary to grieve it. I was caught up in a lot of sadness and some anger, and in order for me to pass through it, I needed to grieve what I had lost and continued to lose over and over with each flare. Loss of bodily control, loss of freedom, loss of a worry-free life, loss of so many things. Once I let that sink in and allowed myself to slowly (very slowly!) grieve my pre-UC self, my emotional health started to … improve. I began to move more toward acceptance on a more frequent basis. I didn’t live with UC; I lived despite it.

If you’re still scratching your head about how to grieve the hardest aspects of IBD, here are some tips:

  1. Recognize that there is a loss there, and that’s OK. 
  2. Remember that it’s not ‘dramatic’ to feel any feeling that comes up.
  3. Work with a therapist to help process the emotional side of things.
  4. Write a letter to your self that was before IBD.
  5. Write a letter to your self that was after your diagnosis.
  6. Be patient with the process. For me, grief is ongoing and an everyday thing.
  7. Be gentle with yourself. Remember the stages are very real: denial, anger, bargaining, depression, acceptance. Feel them all.

What would you add to the list? 

Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home