In my many, many years as a chronic illness patient I’ve met countless new people from all walks of life, in all professions, coming from all backgrounds with every different set of beliefs, morals, priorities. I’ve been let down more than I care to think back on, I’ve been inspired by those who have stepped up, the strangers who have put themselves out there, who have put their energy and time and resources into me and my projects and my health – you truly never know who will step up in your time of need.
Throughout my time in the medical system I’ve met every kind of doctor and seen every level of care, been recipient of every type of “bedside manner” (or lack thereof). I’ve been anxious, sad, hopeful, angry, confused, relieved. I’ve had nurses who make all the difference, who make hospital stays just a little bit less miserable and I’ve had nurses (well, a nurse) who after years of being my go-to, let me down.
I’ve been mistreated, lied to, & betrayed by medical professionals whom I had put my trust in for so long, only for their ignorant judgments to come to light and cause trauma they’ll never be able to understand.
I’ve experienced medical trauma and have medical PTSD that causes me to have anxiety before any appointment and a fear of admission – anxiety and fear towards those who should bring me comfort and relief.
I’ve fought for medications my doctors prescribed but my insurance won’t cover. I’ve asked WHY business men and women who know nothing about medication and only care for money get to determine at what cost my health stops mattering?
I come across so many people who like myself, and many much worse so than I, are mistreated or neglected by the medical system. Stereotyping, biases, and prejudices start from day 1 of this journey, I know they did for me and I’ll never forget it.
Then, there are so many more who simply cannot afford the endless hospital bills, medication costs, and cost of the incredible amount of supplies it requires to be sick. Insurance or no insurance, child or adult, working or on disability, it doesn’t matter. This isn’t elective, optional medical procedures. This is life or death for us, but who gets to make that decision? Who plays god in this system?
It should be our doctors determining what we need and when, that should be enough. We should not have to fight the system just to end up paying out of pocket bc what choice do and have? Debt or death?
How much is my life, the life of a 25 year old (with chronic health conditions and multiple medical devices) worth? And what would it be worth if I were healthy?
Why does it cost so much to be sick? Why do feeds cost thousands of dollars a month? Why do medical supplies like syringes and gauze and bags cost another arm and leg? And why won’t everyone’s insurance cover this?
I hope by bringing awareness to these issues and by having so many chronic illness warriors step up and share their stories we are going to move in the direction of better understanding, more doctors studying these rare conditions, and squashing the harmful thinking and actions that can leave us unable to trust in the system and get the treatments we need.
I write so that doctors, nurses, insurance agents, pharmacists, and those dang business men can see what impact their decisions, actions, and demeanor can really have, how their words and judgments stick with us and makes it nearly impossible for us to trust a doctor again.
I want to ensure that no one can go home at night and forget about those of us who don’t have the luxury to forget about them.
What’s your story?
If you have an experience to share and would like to be featured as a guest, please get in touch. I’d be honored to share anyone’s experiences.