Six years ago, on Valentine’s Day 2014, I was diagnosed with Gastroparesis, and my life was, from that moment on, forever altered. Since diagnosis, I have endured much and have learned even more. I advocate because it saves me from despair and adds meaning and purpose to my life, despite the harsh effects of this cruel illness.
Over time, I have set many goals for myself and for this community, and chief among them is convincing my people how incredibly strong, skilled, able, and special they are. This is not an easy sell, since the world has convinced many of them to buy into the lie that chronic illness makes one weak and worthless.
But nothing could be further from the truth.
I have witnessed agony beyond compare in our GP groups, horror stories of neglect by friends, family, and the medical system; physical, mental, and emotional pain and abuse; career loss, financial bankruptcy, homelessness; hopelessness; and death. I have also witnessed unrivaled compassion, empathy, and spirit and am frequently awed by our members' generous gifts of time, information, advice, and encouragement to other members in need, all while they themselves struggle to get through the long, dark days. Time after time, they pick themselves up, dust themselves off, and find ways to survive, despite the difficulties.
Yet these feelings of worthlessness and inadequacy persist and are perhaps heightened because, despite our monumental efforts, we still have no cure. Last year, in an attempt to pass HR 3396, the Functional Gastrointestinal and Motility Research Enhancement Act of 2019 (a budget-neutral, nonpartisan bill that directs the NIH to expand and intensify its research and education efforts in regard to digestive disorders such as gastroparesis), at my urging and with a strong desire to unite for our cause, members of my Gastroparesis: Fighting for Change community sent hundreds of letters to their congressional representatives and made countless telephone calls urging these lawmakers to sign onto the bill.
In addition, in June of 2019, despite the physical and financial challenges, many of us traveled from throughout the nation to Washington, DC, for an unprecedented patient rally that highlighted our hardships, our need for proper medical care, our lack of research funding, and our desire to once again live “normal” lives. We gathered the day after that rally and (with the help of a disease-related nonprofit who assisted us in scheduling) met in person with our legislators on Capitol Hill. At home, in our individual states, those who could not travel with us hosted a virtual March on DC as well, and a few months later, we followed this up with a Virtual Advocacy Day, designed to sway our legislators to finally open their eyes to our plight and cosponsor our bill. We shared our stories, bared our souls, and put forth our best effort to make a difference for our gastroparesis community.
The result? To date, we have a whopping 22 cosponsors. Yes, that’s right… 22 out of our 435 House representatives deemed us worthy of help… 22.
Now a lesser group of people might have given up at this point, especially considering that in past years, with far less action and advocacy, the bill garnered nearly the same level of support. But is that what we did? No, because we are neither incapable nor apathetic. We regrouped, and a handful of volunteers researched and called the offices of those representatives who so blithely dismissed their own constituents, and we gathered the names and contact information of the health staffers of every single legislator who turned a deaf ear to our cries. And in less than one week, we sent follow-up letters to 185 congressional offices representing 349 constituents. That kind of effort and support from a community our size is unheard of.
Despite the daunting task and the overwhelming odds against us, we answered the call. And we will continue our efforts to educate legislators about our illness and inform them of our needs so that every man, woman, and child in our gastroparesis community can receive competent, compassionate care and so that we are granted much-needed research funding that tackles the causes of our illness, rather than merely symptom control, and which brings us cures rather than band-aids. We must have our lives back!
The current healthcare system has failed us, and the powers that be believe we should sit in silence while they “guide” us to our slaughter. But we are not helpless sheep, nor are we inept or unmotivated, and we vow to make the voices of the more than 5 million of us heard by everyone who impacts our care – our families and friends, the medical community, the researchers, our legislators, the media, and the general public. My friends are suffering and dying while the whole lot of “influencers” gain wealth and prestige at our expense, and we have had enough.
Make no mistake, we are in the midst of a War on GP, a GP Revolution as we like to call it, and we can take no prisoners. We are committed to meaningful change for our community. We can and will realize our goals.
Answer the call. Suit up!
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