Gastroparesis made me adjust my expectations for life
Angela
State: Virginia
Congressional District: VA06
Diseases
Chronic Pain, Gastrointestinal Disease, Mental Health, Migraine, Rare Disease
Issues and Challenges
Angela has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Transportation, Abuse (Mental, Physical, Elder), Caregiving, Copay Accumulator, Disability, Discrimination (nonmedical), Financial Assistance, Food Insecurity, Gaslighting, Geography, Invisible Illness, Job Insecurity / Loss, Legal, Medical Discrimination, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care, Underserved Community
My Story
In November of 2020, I was diagnosed with gastroparesis by Johns Hopkins University Hospital, but my story doesn't start there. It started three years before when I fainted at my job and even earlier when I was diagnosed at 12 with a gastrointestinal issue.
My story could have taken a thousand bad turns but I was blessed with a mother who was a nurse, years of personal experience working as a caregiver & familiarizing myself with the medical world, and a local primary care physician that understood something was wrong but never let her ego be a detriment to my health. I started on a protocol to treat my gastroparesis this August and I understood logically why my access to adequate care was difficult. The pandemic caused some delay in my care over the past year which is totally understandable; the two and a half years I spent fighting with doctors, insurance companies, and business officers, to prove my health status had changed, past methods weren't working, and I needed specialized care because all the normal courses of action weren't working and putting my health at risk, not acceptable.
My path to diagnosis was long, tiresome, and difficult when it shouldn't have been so. I knew my medical history would be a point of confusion, however I foolishly believed that my severe symptoms, deteriorating health, and emergency room visits would show how desperately I needed an adequate diagnosis & treatment. My past medical history should not have been a deterrent to care neither should my age, geography, or type of insurance but they were.
I can say today that I am very cautiously optimistic that the protocol my Johns Hopkins doctor and I are building will make living with gastroparesis possible. I lost three years of my life, repercussions of the delay on my overall health are still being figured out, and I'm left to deal with trauma of those years on top of this serious illness. Healthcare access, insurance debates, medical gaslighting & discrimination not just issues to be addressed in the halls of Congress or in boardrooms. These are serious failings of a broken system and abuses of power that cause more pain & suffering for the patients and their families as well as putting peoples health at stake.
My Motivation and Inspiration
I tell my story because a flash of a memory from when I was twelve.
I'm in middle school with all that involves, my father's cancer has recently gone into remission, and my own body doesn't want to function right. I was in pain, running to the bathroom, having to miss school, and now I was the one having all the medical tests done with doctors poking me at every turn. A small repercussion now, rather large then, was I lost friends & had difficulty forming new friendships because of what was going on. Everything I was facing was a lot and difficult to process, but I never expected feeling so alone. And yet, even though it hurt me, I understood why friends were dropping off. I could barely handle what was happening and they had a choice that I would have taken if I could have. In those moments, my motivation to tell my story started to form. I hated what I was having to deal with: the doctors, the pain, my dad's cancer, and the immense uncertainty. But I remember thinking," Okay, this sucks but if I'm the only one who has to handle this muck that makes it worth it." I didn't want any of my friends to face what I was facing so I would take the hit which is why I share my story now. Gastroparesis is never going away and I can't rewrite those three years of my life; I can tell my story about the inequities and damage our broken healthcare system can do so one less person feels alone in that fight. Ultimately, my voice could change the behaviors, attitudes, and systems of healthcare institutions by reminding them of the humans behind the numbers, their own Hippocratic oath, and impact each of their decisions has on someone's life. My motivation for speaking has grown over through the hard fought years my family and I have gone through since 2001 and now Patients Rising is giving me the tools and space to use my battle scars for good.
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