Over the past several weeks I have heard a number of people who suffer from ulcerative colitis or crohn’s disease tell me that something positive happened or that they were feeling well but they were finding it difficult to enjoy the good times. This has been the case for me for a long time and something I am still working through. The rollercoaster of IBD is something that is all too common and one that can be unbelievably hard to navigate through.
The unpredictable flare ups, random hospitalizations, and surgeries that can appear out of nowhere can and often do leave a person who suffers from inflammatory bowel disease left to wonder when the next awful thing will cross their path. It is only natural. After all, I cannot tell you how many times I have gotten excited about something only to get sick and have it taken away from me. When that continues to happen over and over AND OVER again, it is normal for a person’s brain to want to protect them from disappointment. I know for me, it was easier to not get my hopes up than to look forward to something only for it to never happen for reasons completely out of my control. I started to not be able to handle my body betraying me constantly.
I honestly stayed very hopeful and positive for the first four years after I was diagnosed. And for those of you who have either read my story or know what it was like for me between the ages of 13-17, you will understand how incredibly difficult that was for me. But as the years continued and my mind and body had to endure more, my spirit started to get weaker. And with each new (traumatic) experience, I think my brain tried to scream at me not to get my hopes up even though it was only until I was probably about 21 that I really began to feel incapable of enjoying the good times without feeling an enormous amount of anxiety. It was as if I was always waiting for the other shoe to drop.
I wish I had some amazing advice on how to ride the rollercoaster of IBD. It is probably one of the worst parts about this disease in my opinion. It is impossible to have any decent quality of life when you are so worried that your body is going to fail you. How are you supposed to give it your all in school, at work or IN LIFE if you anticipate that you will just get sick and be taken out of your world again? I honestly don’t have an answer other than to say maybe you won’t.
I do know that is an infuriating response to many and probably would be to me also if I came across this blog. Truth is that I don’t have an answer. All I can say is that you aren’t alone. My friend Sara and I moderated a chat last week about getting through work with IBD and this came up so frequently. I can tell you that these thoughts, fears, anxieties and frustrations that you are feeling are on the majority of people’s minds who suffer from ulcerative colitis or crohn’s disease. And I can also tell you that it helps a tremendous amount to talk about them and see that other people really and truly understand.
So I may not have an answer about how to stop you from worrying about when the next flare up will be, or when you may need to be taken out of your job or need to start all over again in school but I do have an idea of what can help you through these seemingly impossible times – a support system and other people in the IBD community.
And as always, please email me if you ever need to talk at Marisa.firstname.lastname@example.org.