I have officially been diagnosed with neurogenic bladder and bowel for about six years now although I have had symptoms much longer. Finding out initially was just plain hard: I had never even heard the words “neurogenic bladder” before. I felt isolated and fearful. I was so afraid to talk to anyone about my very private situation, I started this anonymous blog . . . the one you are reading now. I felt so isolated. I longed to have someone to talk to about a body that was misbehaving. As I was grieving my old life, I knew I needed to embrace the new one. But how? I longed to understand strategies that others had adopted . . . How do others live this life?
To this day I do not know why I have a neurogenic bladder and bowel; I just do. My neurologist said it could be a consequence of Multiple Sclerosis. That idea really scared me. I have been told that I may never really know why I acquired Neurogenic Bladder. Another notion comes to mind . . . I figure when I go to Heaven I will finally find out. In the meantime, sometimes I just need a little help from my friends.
The tag line for this blog is:
SHED THE SHAME, GET REAL, ENCOURAGE EACH OTHER AND BE PROUD.
I want to share two opportunities to help those of you who likewise struggle: opportunities to shed the shame and get real by sharing Your story. Trust me, there is safety in numbers! Because you can cope, so can I.
My first Idea is to share your story with all of us on this blog, neurogenicbladder.me in the section called “Circle of Friends”. If you send me a letter with your picture and your story I will put it in that section of this blog, with either your real name or a pen name — we want everyone to be comfortable with whatever they decide to share.
If you don’t relish the idea of writing and/or if you have Multiple Sclerosis, the Second Option is to make a video of yourself to share on Healthline, a site dedicated to the stories of Life with Multiple Sclerosis.
Healthline is working to increase awareness and provide hope to people who have recently been diagnosed with MS. It provides a way to give new patients hope by allowing them to hear stories of how other people are managing their own MS. For each and every video that is submitted of a story of one with MS, Healthline will donate $10 to the National MS Society.
So get out your video camera and share your story at http://www.healthline.com/health/multiple-sclerosis/youve-got-this
Whether you choose to do both options or just one, let me encourage you to:
- Include tips on how you cope and strategies for life.
- Keep it positive and thus helpful.
Either way these are opportunities for you to turn your lemons into lemonade and help someone else.
Please share your story. We need each other to stand strong.