This one took me a few months to make. I wanted to make sure it had more information in it to show what everyone might experience when diagnosed with this horribly under-diagnosed disease that has no support from the medical field or awareness. It is easier to say that these symptoms we experience is “all in our heads,” than for them to admit that they simply don’t know or understand the disease. All we want from them is for them to say that, and for them to offer full support by devoting time to look into this disease. It is a difficult one to understand, that is for sure. But, it can be understood. Even we know sometimes it is a neurological problem (often accompanied by other diseases such as neurogenic bladder, CIP and the inability to process and breakdown nutrients), a physical problem (the nerve to the stomach that tells it to contract is damaged), or is a symptom of diabetes (type I and II). Beyond that, we don’t know nor are we acknowledged. Sometimes we are ignored altogether. This is why I made this particular video. I hope it helps patients feel comforted; that they are not alone and that maybe physicians or other medical personnel can see first-hand what we go through on a daily basis, not just what they see in an office visit or hospital stay.
Thank you to those who contributed their photos to this project. Take the video and share it with everyone you know. Awareness is key. Keep the fight!
