For those that have been reading my blog, then you will know that I am an “encopresis survivor” (“enco-survivor” for short). I thought I would share my reasons.
When you have this condition, you feel so alone. I know I did. Understandably there are parents (including my own) whom also felt alone. It’s not their fault, it’s not mine and it’s not anyone else that has this condition or is the family of someone that is. Growing up, I had very few friends, but finding someone else that has this condition is something I craved. I will admit there is a guy I grew up with whom I’m sure had this too, but I respect his privacy, but apart from him I knew no one else.
I live in a town of 15,000 locals (55,000 in the tourist season). I also live remote. The internet wasn’t around at the time, so no forums, “googling” or anything like that. It was hard on my parents, and afterall this I still love them and we’re very close (rest assured parents that enco won’t affect your relationship with your child, it shouldn’t anyway).
For many years I always felt that my stinking condition was my “deep dark secret”. Whenever anyone asks me my most embarrassing moments, anthing to do with encopresis and what I went through will NEVER be brought up. I never laugh at the joke that people use about “pooping themself” when scared or wearing “brown pants”, etc as this is actually teasing the life that I lived through. When your body functions properly and gives you the distinct indiction “to go”, people think it’s common sense to go…they can’t understand what it feels like when THAT particular feeling doesn’t exist (or very small), and no one believes you. Bullying is hard enough.
There wasn’t anyone on TV that admits to having this condition (I had to research it myself about 4 years ago, it wasn’t on the Dr Phil website then….it is now), not in magazines or anything. I haven’t come across a single celebrity that admits to have had this condition. Not a single role model to look up to, relating to this. It’s great that celebrities are opening up about being Gay/Lesbian, drug/alcohol abuse, victim of bullying, depression, etc….but what about something a bit more “socially taboo”? (if you know someone point them my way).
There is a saying “Be the person you wish to see”…I wish to see a role model, willing to open up about this condition. Just because I don’t have encopresis now doesn’t mean I won’t talk about it (I couldn’t for a long time but I can now). The more enco survivors open up, the more it can help the current families living through this. Perhaps doctors should listen too, so then they can better help their patients by knowing how others have interpreted different treatments. The things that work for me (and don’t work) I can mention, those that I won’t support..I won’t. I am human, I have my faults. I also have a heart.
Children, teenagers and adults whom have this condition (or had it) need to find others to talk to. I have noticed parents have started numerous blogs and forums (some current, some abandonded) and a few fellow survivors open up too (mostly on abandonded sites), but we crave that connection too. To tell your child “you aren’t alone” isn’t easy to believe unless they can see/hear/read/communicate themselves. It’d be great if I can get onto the Ellen Degeneres Show or Dr Oz, or others to help really open up about this condition. I am currently writing a book about my experiences (and a few others that have been kind enough to share their stories), but if you have any suggestions or questions then let me know.
For many years I kept this a secret, but it was eating me up inside. It was hard initially to open up (most of the people I know probably still don’t know this is something I had), but I have to share my story to save someone. I have cried at night many times because I want to help so much, but can’t. I can write my book (get it published), write this blog, and go from there. I feel better inside knowing that I’m helping someone. Perhaps I can help with any myths about this condition (for example. “why does my child say he/she can’t feel or smell when had an accident?”), who knows. Everyone is different and how they cope/treat is different too. How I experiened it might be different to another person, it might also be the same or similiar to another. The more we open up, hopefully the more awareness we can generate and help others that wish someone would speak up for them. I wish someone had spoken up for me and believed me…but they didn’t. I have to be there for others. I’ll be the role model and the voice, if no one else will!!
I hope that makes sense. I hope it helps. Let me know. 🙂 xx