Tonight I’m sitting with my parents watching a special on Dateline about Tom Brokaw’s cancer. My mom had cancer (in remission) and she is relating it back to her struggle. But I feel as if she and others can’t see those of us with EDS and other chronic illnesses who don’t really have the chance to achieve remission of effective treatment. When I’m struggling, most days I feel like there is no sympathy for me, no understanding. I wish that my struggle was known. I wish that people would say “hey, how are you feeling?” But my struggle is mostly invisible. You can’t see digestive issues or pain. Most doctors don’t even know what EDS is. Sometimes I struggle just to make it through the day. But I don’t get the automatic understanding that something like cancer or heart disease brings. I don’t get a chance for chemo or a transplant. I simply must live and wait and adapt. I have to plan my life around this disease. Consider what it will be like after I leave college and don’t have hoards of people around in case of an emergency. What happens when my parents can no longer take care of me? What kind of career is suitable with someone for EDS? These questions are ALWAYS swirling around in my mind. I think that if there were more understanding of EDS these questions might be easier to answer. But alas, just explaining it takes so long that most people tend to zone out. That’s why we have an awareness month. For exactly this reason.