ANONYMOUS’S PERSONAL STORY

Hello to everybody. I bumped into this website in one of the several moments of discomfort of my life. I was born with myelomeningocele, spina bifida, so I’ve been dealing with fecal incontinence my entire life.

I’m actually crying reading some of your posts, for the first time I feel someone is considering this problem as a burden that sometimes is just unbearable. I’m a 23 yr girl from Italy and I would like to share my story with you, hoping it might relieve someone else’s pain, as your stories just did with mine.

As I said I was born with spina bifida and Currarino syndrome, I spent my infancy in and out of hospitals, but it wasn’t awful, it was an experience that I will jealously keep in my heart. Fecal incontinence is the only disability I have, I’ve been so lucky not to have my legs injured! The real problem came with my early adolescence, I was literally thrown in a world of “normal” people, and I wasn’t prepared, at all. The impact this disability had on my personality was immense, massive. It changed me, completely. I became cold and I just hide myself from everyone, the burden I wasn’t prepared for was simply overwhelming. My parents gave all the medical care they could, but they weren’t there when I needed them most. The loneliness which became an indelible part of me still makes me hold my breath so many times. I was a brilliant student, I then decided to apply to med school, probably because of this special bond I always had with hospitals, I think. it was during the first 3 years that the turning point came off: bulimia nervosa. I call it turning point because after some time I understand that the infinite struggle against bulimia was actually me, me trying to escape from the wall I built around myself, escaping from the immense ocean surrounding an island. They have been the most horrible years of my life, but I also had the courage to seek some help. I never talked about this disability to anyone, my family cannot even image how deep is the solitude I dug into myself.

Two years ago I started psychotherapy, I’m really better off now, I mean, bulimia is under control, but fecal incontinence isn’t something that I can always control. I became aware of the fact that the thing I am mostly afraid of is being alone, I just realised I want to learn to love and to be loved, and this is something that I always kept out of my life, because I was ashamed, I felt inadequate, dirty, guilty (for letting me be overwhelmed despite I’ve seen people going through worse). I’m 23 and I’ve never had a boyfriend, I was never even able to tell my closest friends the real reasons why I never wanted to get close to a man. But now I want this to change, I injured myself, a lot, now I want to take care of me, but still I don’t see how I can let someone else in this messy life.

Thank you a lot for sharing your stories, it really helped me realising that someone else feels the burden that we have to live with. I wish you all the best.

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Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer.