WARNING! This post will not place in the Top 5 most uplifting posts on Stomalicious. I am usually a pretty positive person, and prefer writing about happy and inspiring things. However, it’s important to be honest and talk about all aspects of IBD, particularly the roller coaster of emotions and different feelings we go through. That is why this post is about fear.
What is your greatest fear? I don’t mean to bring this up to cause concern or negative thinking, but as a born worrier, I know I have disturbing thoughts from time to time.
Unfortunately, many of us do come face to face with our fears at some point in our lives. Whether it’s breaking up with the love of our lives, death, an accident or an illness. Inevitably, this will cause a period of turmoil and pain, but most of us come through the other side, and usually as a stronger person.
As we age and go through life, the things we fear and worry about the most, also change.
If you’d asked me this question 10 years ago, I’m not sure what my answer would have been. I know for certain it would NOT have been getting Crohn’s disease. In many ways I thought I was invincible. You know of and hear about other people being unwell or being diagnosed with an awful chronic condition or terminal illness, but you never think about that happening to you. And it’s not something anyone should worry about or fear. What’s the point in that? But it does happen. I got Crohn’s disease.
When I was really unwell with Crohn’s, my biggest fear was never getting better. Never going into remission. Never finding a medication that worked. Never getting my Crohn’s under control. Living in a constant flare. I tried medication after medication, always hopeful. Always telling myself that the next thing would work. I didn’t worry every day, and I was still positive and always remained hopeful as much as I could, but I had many conversations about this fear and it would often haunt me at the back of my mind.
On top of this were the daily things I was scared of like leaving the house and soiling my pants, but my greatest fear was the unknown. The long-term fear that this might never go away. I was more scared of that than of dying. I’ve had a few pretty scary incidents like passing out walking around the block with my mum one day. My tiny little mum who is half my size had to catch my fall, and then I later discovered I’d had a DVT which caused a pulmonary embolism. That’s pretty scary!
I remember being home on my own one day, walking to the fridge after stupidly not eating or drinking anything all morning. I didn’t feel right. My legs went numb, I couldn’t focus, I was dizzy, head spinning, I lost control and fell flat onto my bottom on the hard tiled floor right where I’d had a seton inserted a few days earlier to help drain an anal fistula. I crawled back to my bed dragging myself along the floor, too scared to stand up for fear of passing out again. After calling Michael and mum in tears, I lay on the bed in shock. What was going on? My body was failing me. I was weak. Confused. Frightened.
This was still nothing compared to not knowing if or when I would ever be well again. Be normal and healthy again.
Despite my fears, I fought on. You’ve got to. Although in the end for me it required surgery (my Crohn’s was very severe and resistant to all the different medications I tried), I did eventually get it under control.
My greatest fear now? Will it come back? And if it does, when? And if it does, how? How would it manifest? I don’t feel like it will. I feel like my Crohn’s is gone from my body. The inflammation is gone. There are a lot of people I follow or talk to who have ongoing issues or surgery complications, and I’m aware this could happen to me too. Crohn’s is a chronic condition.
Yet I talk about it in the past tense. Is it right to talk about a chronic illness in the past tense, as if it’s not there anymore? I know I still have Crohn’s disease, but it’s in remission. It’s still there. My daily medication and living with an ostomy won’t let me forget that! Right now it’s lying dormant, hopefully forever in hibernation never to be awoken again.
I can’t spend my life waiting for it to come back. I know there’s a chance that it could, but there’s just as much chance that it won’t. So what is the point in worrying about it? Could the mere action of worrying about it even cause it to come back? Worrying and fearing something that may never happen is a futile exercise! I know now full well that I am not invincible, but I also know that I have gotten through it once, and if it happens again, I can do it again.
There’s nothing wrong with admitting we are fearful of something. We can be scared and brave at the same time. It takes courage to acknowledge our fears, live our fears, overcome our fears. We have to tackle our own personal fears, but talking about them and coming together with others certainly helps me get through mine. I hope it helps you too.