Patients Treated as Drug Addicts in Emergency Rooms
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Please help me raise awareness and create change by signing this petition about abuse and discrimination in Emergency Rooms across the US, against people with Invisible & Chronic Illnesses, as well as all others. My goal is to have SIGNS put into Emergency Rooms and all Emergency Room staff be educated on INVISIBLE DISABILITIES, such as my condition - Congenital Heart Disease. This mistreatment is due to ER Staff assuming we, as patients are drug addicts, mentally ill, or young and dramatic. This judgement will kill someone one day and I am trying my best to do everything I can to prevent this.
The inability to treat each patient as an individual should be the number one priority of every hospital and enforced.
I am 31 years old and am one of the oldest living people in the world with Hypoplastic Left Heart Syndrome, which is a very serious form of Complex Congenital Heart Disease (CHD). CHD is the number one birth defect in the US. It is the same condition Jimmy Kimmel's son, Shaun White, Ed Helm's, Danny Gokey's late wife, and millions more were born with. CHDs are very serious heart conditions that require lifelong care and decline as you become an adult and your childhood surgeries don't work anymore. This requires many of us to seek Emergency services frequently. As a result we are seen as drug seekers or labeled overdose patients and treated with extreme disrespect, neglected and even abused.
There is no cure for CHD and no fixing it. It is various physical malformations of the heart and is forever. In my case, with HLHS, half of a heart, I will live my entire life this way unless or until I need a heart transplant. Therefore, I am a professional patient, meaning I have grown up in hospitals and have seen the good, the bad and the ugly from hospital staff to criminals to patients. But nothing has been as bad as it is now.
I have been a CHD advocate for 10 years. Although most of my advocacy work is behind the scenes, I also make YouTube videos, write blogs, speak to parents, doctors, and survivors, and lead a large Facebook community. I am also working on publishing my first book and beginning a podcast.
During my advocacy work I discovered a disturbing commonality among many of us living with various Invisible & Chronic Illnesses. That is, the prevalence of abuse and neglect in the ER and hospitals.This is potentially lethal discrimination against patients with invisible & chronic illnesses. This mistreatment permeates the disabled community.
My call to action is to sign this petition to get the attention of someone in power who can help us FIX this. Someone who will enforce real change.
The first time I was ever treated like a drug addict in an emergency room was five years ago in Washington DC. I was 26 years old therefore I was already used to going to the ER for 26 years, being treated with love and care and being sent to the back, admitted for observation, and treated appropriately. However, this stopped happening. I didn't think anything of it until it kept happening on and off as I continued to travel the country. It unfortunately has increasingly gotten worse and is now to a point where many hospital staff assume I am a drug addict because I am young with an invisible illness. Then when I try to defend myself and cry they tell me to stop crying, I am overreacting and having a mental problem, and try to give me Ativan or another drug, which I always refuse. This is disgusting. They are annoyed with all of the drug addicts, yet are the ones who create them. They want to shove drugs down my throat instead of listen to the real problem, which goes against anything they learned in school. Not only does this not make any sense, it is medical negligence in every sense of the word, it's abuse, and it's happening all over the United States to innocent patients like me trying to get better by being smart and going to the ER like our Specialty Doctors tell us to.
My goal is for all Emergency Rooms to understand, enforce and make changes according to the following information:
1) Most of all, to enforce that a SIGN in ALL Emergency Rooms across the US be implemented. Along with this sign should be an educational class, mandatory for ALL Emergency Room staff to take to understand the SEVERITY of Invisible Illness conditions and the PTSD and other mental traumas that come along with being born with an invisible, some terminal, conditions and to treat us with respect and an understanding that WE ARE IN THE ER FOR A REASON. We do NOT want to be there anymore than you want us there. We are NOT drug addicts.
2) Know the seriousness of Invisible & Chronic Illnesses, especially in people below 50. Especially in those with Congenital Heart Disease, the number one birth defect in the US.
3) Understand that we are ALL Professional Patients with extremely fragile and sick bodies who look healthy and know exactly what we are talking about. And we WILL be back. Or, for example, in my most recent situation, we are unable to speak, understand our loved ones also know exactly how serious our condition is and no one is being "dramatic" or "exaggerating." We are terrified because we know the seriousness of our health and you, as Emergency Room staff, are being paid to help us, yet refusing to believe the problem. Also, to Understand people with Invisible Illnesses will be back, maybe frequently, to the ER, and do not deserve to be treated any less humane simply because we have more emergencies due to our illness and are not drug addicts.
*Please Sign this petition to get someone in power to pay attention to this urgent problem going on across the US, especially with people with Invisible & Chronic Illnesses getting treated like drug addicts and therefore not getting the proper treatment and/or getting mentally, verbally, and physically abused in the process by hospital staff.
I have heard many stories since I posted this as a Facebook post and it is so sad to me how many of us are abused and/or neglected, mistreated, and not believed in Emergency Rooms.
All it takes is one death for them to listen, right? WHY? Why does it take people dying for people to listen and create Laws? Who's they? The people who can stop this, create a Law, or an ACT for Emergency Room Staff to be fired if they disregard what a patient tells them about their own health, if they discriminate, and/or voice their opinion regarding the type of person they think a patient is, instead of being focused on saving our lives.
I thought it was their job to listen to us and help us with what we tell them is wrong, find out how to help us, and decided whether or not we need to be admitted or not. I do not understand how one doesn't believe someone who has scars from heart and other surgeries, as well as 20+ years of medical documents in our records as a professional patient to back it up. However, we shouldn't have to prove our illness to them. Before this epidemic of drug addicts, this has not been an issue to my knowledge.
Please understand, all it takes is ONE ER staff member to choose their judgement of this epidemic of drug addicts over listening to and investigating the reality of what is happening, to kill someone like me.
We look healthy, yet also have debilitating life threatening illnesses. The problem is magnified if you look too young for their liking to be sick.
This is the epitome of discrimination and medical negligence.
This issue needs to be solved and I am asking all hospitals all over the country to take charge and implement signs for us before they have other problems to face once these emergency rooms begin causing permanent damage and killing people like us with extremely fragile bodies.
Although I unfortunately have many personal examples, below is my latest and most severe and terrifying experience of ER staff trying to treat me for an overdose while I was having a stroke. Simply based on an assumption from my boyfriend and I being young.
Keep, in mind, this was after my boyfriend had told them, in detail, my lifelong severe heart condition living with half of a heart (hypoplastic left heart syndrome) as well as a history of TIAs. There is one woman in particular whom every time I come in there she says I am faking something. She has said things to me like, "This isn't McDonalds, you can't have it your way! Leave if you don't like the way I'm treating you and go to a different hospital!" And it was this same woman in the story below. I have only reported her twice now, even though it's happened multiple times, yet they keep her there. I have heard many horrible stories since I posted this on Facebook and people told me what they have went through which is equally as horrible.
It keeps coming down to one thing: We are all treated like drug addicts because we are young and look healthy.
Please watch my attached Video and/or read below my latest ER Discrimination Story: What happened to me that prompted me to create this petition.
Last Sunday, I completely lost my ability to speak for 12 hours. All I could do was cry, I forgot how to form words. It was terrifying. I was trying so hard and couldn't understand how to talk, couldn't use my hands or legs, and my whole body was numb and tongue swollen.
I was happily just eating an ice cream cone after dinner laughing with my boyfriend on our couch and then bam out of nowhere I had no idea what was happening to me. I wanted to lick my ice cream cone but I didn't know how to move my hand to my mouth anymore and I was thinking really hard trying to figure it out. My boyfriend started asking me questions. This is when I figured out I couldn't talk anymore.
My brain was shaking so bad I wanted to tell him I think I'm having a seizure but I couldn't speak or move my face. Then he took me to the ER.
I was so scared to go, like every time, because of how horrible ERs treat people and have treated me in the past. Esp young people with invisible illnesses. Even after they see the medical history and after they see the scars. Still, all they see in me is the 20 drug addicts from earlier that day or week who may remind me of them.
My boyfriend had to leave for a few minutes to move the car, I couldn't tell him no but I tried. I was scared they were about to do something to me. Then sure enough when he walked away the lady he had told I'm having a stroke to said, "ha yeah right this isn't a stroke this is definitely an overdose" then kept asking me what I took and told me to stop pretending I couldn't speak. She wheeled me into room, the guy said whadda we got?" The lady said "overdose" then walks away. Then these people hold me down as this guy rips my pants and underwear off because they said they needed to do a catheter to test my urine to see what drugs I did since I "won’t tell them". They started taking off all my clothes to do a bunch of drug addict people tests and I started screaming and kicking them off of me until my boyfriend got back to me. They all kept saying it’s a drug overdose and I couldn’t speak to defend myself.
If I could speak this would have been a different story. Although even when I can speak many of them don’t believe me. When my boyfriend got back I was bawling my eyes out, shaking, and holding on to him and wouldn’t let them do anything to me. Then once he told them again what happened they all changed to ordering MRIs , etc. And then became really nice to me.
And this is how PTSD is created. Them holding me down and that guy ripping my clothes off won’t stop replaying in my mind the whole time I’ve been here ..yay more things to add to therapy as if I don’t have enough. Thanks, ignorant ER people.
I don’t care how many drug addicts and overdoses you get a day, this is not my problem or any innocent sick person and is not an excuse to treat an innocent sick person like a liar.
We are so tired of hearing "yeah but you don’t understand how many drug addicts come in and lie to us, fake different sicknesses to get drugs, etc" No we actually just don’t care because it is 100% irrelevant and has absolutely nothing to do with us as an individual human being.
This is called discrimination and discrimination can kill people. Esp. in this environment, with our medically fragile bodies.
It makes us not even want to go to the hospital no matter how sick we are. Therefore, our fear alone of being treated like drug addicts and not being able to handle the stress of going to the ER when we are sick, in itself, could cause severe or permanent damage.
This would all be avoided if ER Staff would simply listen to our loved ones and us as we tell them the truth from the beginning.
The inability to treat each patient as an individual should be the number one priority of every hospital and enforced.
Please help me raise awareness and find someone in power to help us create a Law, ACT, etc by signing this petition about ER abuse and discrimination against people with Invisible & Chronic Illnesses being mistreated and not believed due to them assuming we are drug addicts, mentally ill, or young and dramatic.
This judgement and unprofessional behavior is lethal and could easily kill someone one day. I am trying my best doing everything I can to avoid this happening. I write this in hopes it creates a law and saves someones life.
I want to try to save as many lives as I can by creating this petition to ask for someone in power to create a Law, an ACT or something to enforce Hospital Staff to treat each patient as an individual case and end patient discrimination and stereotyping. That alone will literally save people's lives.
Thank you so much for your support.
Video Message: https://www.youtube.com/watch?v=X-S_f8_uGqc
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