Too many in the outside world see my online community as "just" a Facebook group. That must change. Too many providers and other care-related bodies have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions there. They miss the benefits -- to both us and them.
Our #Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. They are not stops for "bashing" physicians, although that does occur. They are not hosts of misinformation, although we do combat that. And they are not "negative," pits of despair, although we see many who lack hope.
Facebook groups offer far more. They are sources of physical, emotional, mental, social, and spiritual support. They are the center of information-sharing and advocacy efforts. They are our best attempt at getting out accurate information regarding the causes, effects, and available treatments and resources for our illness. They are a one-stop shop where we treat the person as a whole and not simply as a diagnosis. They are self-help and education communities. They are the light at the end of a sometimes very dark tunnel and a source of encouragement and hope for those who the medical system and families and friends have failed. They are "home" to both many who are isolated and lacking basic knowledge and support and to those who wish to offer such knowledge and support.
And, so, I encourage healthcare professionals, researchers, legislators, the media, pharmaceuticals, insurance companies, loved ones, and the general public to lose your preconceived notions and open your eyes to the possibilities for collaboration. We are not your enemy and we need your help.
There are currently 23,500 members in our largest Gastroparesis support group, all longing for answers and beseeching you for assistance, and I am guessing we closely reflect and represent many of the estimated 5 million GP patients outside social media. Hear our cries and begin partnering with us to develop solutions to our common problems and start meeting our unmet needs! We seek partnerships in our quest to thrive, despite the cruel nature of this illness.
My goal from the very beginning has been two-fold: to tell our stories and expose the problems we face and to find solutions to those problems. I do not post and plead simply to complain. So, if you can assist us, please contact me via private message here on Facebook or via email at firstname.lastname@example.org and I will be glad to discuss the possibilities. There are many opportunities for your further involvement in our community. If you are a physician, researcher, legislator, or other interested party, we welcome your presence in this community, and we long for open and honest (but kind) conversations and collaboration. I am convinced that, working together, there is no problem we cannot resolve.