Please complete the form below to be included in our “Demand Recognition” campaign, which outlines some of the major changes we seek and the expectations we have for the medical community.
Digestive disorder/disease patients are frustrated by the lack of understanding, knowledge, and appropriate medical care surrounding our conditions, and it is time to make a change.
*Recognition of our humanity – We are not statistics, case studies, or room numbers. We are your fellow human beings, individuals with a passion and desire to live normal, full lives. We have families and loved ones with whom we wish to share a future. We have hopes, dreams, and goals we wish to fulfill. We have a chronic illness but we have not lost our will to live and thrive.
*Recognition of our struggle – We endure hunger, pain, nausea and vomiting, bloating, weight loss/gain, early satiety, acid reflux, fatigue, and a whole host of other debilitating symptoms which often limit our daily activities and prevent us from living normal lives. Further, we frequently battle exhaustion, depression, anxiety, feelings of worthlessness, shame, and guilt, and mental anguish beyond compare. We long for understanding, compassion, empathy, and acknowledgment of the serious mental and emotional hardships which accompany our illness.
*Recognition of our need for proper diagnosis & treatment – We seek standardized protocols and procedures for diagnostic testing as well as thorough explanations and follow-up regarding the results of such tests. We seek suitable patient education and resource materials for all who are diagnosed upon the moment of diagnosis and urge you to provide patients with the latest knowledge of the nature of our illness, our immediate and future treatment options, emotional/mental health resources/referrals, dietary assistance, support resources, and instructions regarding follow-up and emergency care.
*Recognition of self-reported symptoms, patient knowledge, & right to self-determination – We have a right to be heard and understood, to be believed when we speak of our symptoms, to express our concerns and convey our own knowledge and experiences regarding our condition, to refuse and suggest treatments, and to share in decision-making concerning all aspects of our care. We are individuals and should be treated as such.
*Recognition of the need for proper education of all medical professionals – We urge you to properly educate medical students and all physicians involved in our care through curricula, continuing education classes, training sessions at the point of care, and other means as necessary and suitable. We encounter many in the medical field who know little of our illness and cannot offer us appropriate care. We have a right to knowledgeable, professional medical personnel at all points of care.
We petition you to usher in the changes we seek. We deserve better – and we demand better.