When I was diagnosed with Crohn’s disease five years ago, I assumed that one of the hardest things to deal with would be the symptoms of the illness; the diarrhea, the constipation, bloating, fatigue, the blinding pain, and that’s not even all of them! You are probably thinking “surely that is that hardest thing to cope with?” and don’t get me wrong it’s horrible to live with, but to some level I expected to find this hard. The more surprising consequence of Crohn’s disease that I didn’t expect is the monumental loss I feel for the health I used to have and the grief I experience for all the wonderful parts of life I have missed out on and will continue to miss in the future.
I often, unhelpfully, find myself thinking about what my life might have been like if Crohn’s didn’t come crashing into it five years ago. I think about all the cocktails and meals with friends I have missed, in trade for hospital admissions and 9 pm vomiting. I ache over the proposal my now Fiancé had originally planned for me, but I was in too much pain to leave the house that night. I wonder how many job opportunities I have missed out on because the stigma and discrimination of disabilities still absolutely exists in our society. It’s painful to think about.
I think in some ways the misunderstood nature of Crohn’s disease can make this harder, as the narrative of it being “just a bad tummy” is still common amongst people who have never had their lives changed by this diagnosis. A stomach full of stories, told by Crohn’s disease, that no one gets to see or hear unless I feel brave enough to share it.
I will continue to grieve for the parts of my life I have already lost to Crohn’s disease and everything I will lose to it in the future. But I will also hold space for my strength and resilience that allows me to live with Crohn’s disease, a strength that everyone with Crohn’s and Colitis has in common. I will find ways to tell my story and take the power back from Crohn’s disease. My story, told in my words. I am thankful in many ways that this illness has allowed me to refine my relationships and surround myself with kind, compassionate and permission giving souls who support me in my grief. People who don’t make me feel worse for practicing boundaries and saying no to plans that Crohn’s disease would snatch me away from anyway.
If you are wanting to support someone you know and love who has Crohn’s disease, hold this loss and grief in mind as well as the physical symptoms you have come to learn about. You never know the secret sacrifices someone with this illness has had to make just to survive and the pain this may have caused them. From something as small as missing their favorite TV program because they were so fatigued, they had to go to bed at 7pm, to something as big as losing their job or relationships. Grief never shrinks, we just learn to grow around it and this process is exhausting.
For people with Crohn’s disease, I see and feel your loss with you. Keep being the strong and resilient soul that you are.
