(This is a guest post by Marni Fogelson, who is a Crohnology member.)
When I was diagnosed with Crohn’s — after a difficult and often painful year — I read extensively: books, medical websites, blogs, basically anything that referenced what this disease would feel like and how it would change my life.
Of course, it already HAD changed my life, but I was looking for hopeful stories and reassurances that I wouldn’t always feel like this — “this” being horrible, exhausted, and scared of pain and embarrassment.
Although I eventually felt like I understood the physical aspects of IBD — before my diagnosis I would have been hard-pressed to tell you where my colon even was — it took me much longer to come to terms with the emotional aspects.
I felt like I had failed my body. As an active, athletic person who ate healthy and had no family history of IBD, I blamed myself.
I have two young children, one of whom was adopted from Ethiopia just a few months before my initial symptoms began. I felt like I was constantly falling short of my “good mother” expectations on days when being away from a bathroom for any length of time was impossible, or when I felt like I needed nap time as much as they did.
I worried that the life I loved, with plans for international travel and no need for medication, had vanished more quickly than I could even comprehend.
Through time — and as my disease has (knock wood) calmed as a result of medication, diet, and alternative treatments — I began to develop a healthier relationship with my body. Just as a parent learns that she can’t control her children at all times, I came to terms with the fact that sometimes my disease will act up without good reason. Worrying about it and berating myself isn’t going to help.
IBD can be mysterious and unpredictable, and so many of us try a variety of drastic changes in diet and lifestyle to keep it under control. I try not to take for granted the times that my digestive system actually cooperates, and I control the aspects of my health that I can. Letting go hasn’t been easy, but learning to relinquish responsibility has been valuable in other aspects of my life.
A few years post-diagnosis, I’d like to tell that scared woman — who doubted she would be able to travel, or chase her kids endlessly around the playground, or feel anywhere close to healthy again — that our bodies are capable of amazing things.
I know my current condition is likely to change, and that flares will challenge my mental and emotional well-being as much as my physical. But the knowledge that my body has recovered several times helps me remember that it can again come back to a place of health.
It helps me remember to have hope, and share that hope.
(If you would like to share your story, see our page on guest posts.)