Earlier this week, while looking for educational articles about living with chronic illnesses, I ran across an article that made me absolutely furious! I know that not all articles online are positive or accurate, especially when they are about conditions or diseases that are misunderstood and unfamiliar. Part of my mission is to sort through and share the articles that provide new research information or suggested treatment options that may help others as well as myself. Sure there are times when the range of severity may not be well described. Times when symptoms and their impact on one's quality of life are downplayed, when treatment options shared don't help the harsher cases, etc. When these articles are found, I often express my appreciation to them for sharing information regarding Gastroparesis, while also encouraging them to include more complicated or severe cases as well.
HOWEVER, this article I came across was completely different. It was written by an ER nurse, one that describes himself as having years of experience dealing with chronic illnesses. The purpose of his article was not to describe an illness or even offer treatment suggestions. Instead, he was writing about his experience in the ER setting. Stating how weekends aren't as busy as people would expect, simply because it was the weekend, and well patients tend to wait until Monday before being seen. There's nothing wrong with a "Life in the ER" description, right? But it didn't stop there. He went on to explain how messed up the ER is, how people that shouldn't be there are coming to the ER instead of seeing their personal drs, how drs are sending their patients to the ER because the next available appointments are months away, and how inpatient some of the patients are. Well, I think we all can agree that the ER can be a very long and chaotic wait. Most of the article was harsh, I mean if he hated working in the ER so much, why is he a nurse there? But one sentence really set me off and made me livid! He stated ""Next to her there’s someone who never thought it would be a good idea to take care of themselves throwing up into a bag that we provided them – the vicious cycle of gastroparesis and narcotic abuse." You've got to be kidding me, right? Here is someone that works in the medical field with the responsibility of taking care of patients, regardless of their situations, and he finds it upon himself to openly judge an illness publically! Comments like this just reinforce why it's so difficult for patients, including myself, to make visits to the ER. Why we fear that we will not be taken seriously or treated effectively. Why many of us would rather sit at home and suffer or even die, than force ourselves to seek out medical care in the emergency setting. I know that not all nurses or doctors share this attitude or lack of sentiment, but still, we have all either experienced first-hand or heard of others experiences with being mocked or ignored by the very people that are suppose to be there to help us. Any way, I could not just sit there and let this article be posted and read by others without speaking my opinion. So once again, I reached out to some of my friends. TOGETHER, we made it a point to not only express our dismay over the article but also to educate him on the reality of Gastroparesis. To let him know how hurtful, judgmental, and inaccurate his broad statement about Gastroparesis were. This was my response to him: "I find myself distraught and furious after reading your article. We are all aware that there are people that misuse the ER but there are also legitimate patients that are left with no other choice. But to sit back and judge others, especially those with debilitating illnesses and symptoms is unprofessional. Comments like yours are what's wrong with the medical system today. Gastroparesis is a horrendous disease that greatly impacts patients' lives. The symptoms can become extremely serious and life threatening if not controlled and yes, it is an emergency sometimes. Relentless vomiting, inability to eat/drink, severe unfathomable pain, dizziness, unimaginable nausea all are common symptoms for patients with Gastroparesis. These symptoms can lead to severe dehydration, electrolyte disturbances, blood pressure spikes/drops, tachycardia, blood sugar drops, malnutrition, etc.. Many people with Gastroparesis have other digestive motility issues as well, such as colonic inertia or pseudo-obstruction, which can cause their intestines to rupture and even become septic. It is not uncommon for Gastroparesis patients to have feeding tubes, PICC lines, PORTS, or even ostomies - which makes their medical treatment even more difficult to treat and reinforces the necessity of emergency care at times. The list goes on! Granted, every case may not be this severe every time, but who are you to question if it is or not? And then to have the audacity to say ""Next to her there’s someone who never thought it would be a good idea to take care of themselves throwing up into a bag that we provided them – the vicious cycle of gastroparesis and narcotic abuse." Not everyone that has Gastroparesis uses narcotics - in fact many have to suffer through the pain without pain medications because we know that they can make the situation worse. Additionally, are you implying that Gastroparesis patients don't take care of themselves? Really? Who would say such a thing about people they don't even know? There are many ways that people can end up with Gastroparesis - some may be idiopathic (unknown reasons), some as a result of damage to the vagus nerve because of prior surgeries, post-viral, diabetes, etc... Honestly, I think you need to do your research before bashing patients. " After receiving our "educational" comments, he thankfully chose to remove his article from his webpage and facebook page. Though an apology would have been nice, his removal of the article was definitely appreciated. So here's the point! Beware! We are tired of being judged, misunderstood, ignored, and looked down upon. We did not choose this life; But we do LIVE this life! We will not back down. We will continue to stand up for our friends, family members, and even ourselves. We WILL be heard. We will expect to be respected. We will continue to fight for awareness, even if it's just one person at a time.
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Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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