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"From Awkward Laughs to Inked Paths: Writing Without Limits"
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“From Awkward Laughs to Inked Paths: Writing Without Limits”
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- Do Disabled People Get Labeled As “Creeps” More Frequently Than Non-Disabled People?
- Exploring Neurodiversity in TV: Authentic Representations and Ongoing Challenges
- 10 Famous Authors with Ehlers-Danlos Syndrome and Neurodivergence You Should Know About
- 10 Essential Tips for Thriving in the Summer Heat with Disabilities
- Understanding Neurodiversity: What Psychotherapists Need to Know
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Opinion Piece: 620 words
Improving Medical Care: What Patients with Complex Medical Needs Want Doctors to Know
What Patients with Rare and Complex Needs Want Doctors and Nurses to Know
Trigger Warning: I am upset not just for myself but also for all the other patients like me.
As a patient living with multiple medical complex needs, including Ehlers-Danlos Syndrome, there are a few things I would like doctors and nurses to understand. First and foremost, please stop gaslighting us. If you don’t know something, just say so. I can respect a provider who admits their limitations and commits to finding answers. What I cannot respect is a doctor or nurse who dismisses, belittles and ignores genuine concerns. One who labels patients as “malingering” just because they can not see or feel what the patient feels. Trust your patient first. Don’t go into appointments with the assumption that patients want opiates or attention. In a way we do want attention, the kind that fixes what’s broken.
Patients like me shouldn’t have to search for twenty years to get the correct diagnosis and treatment. It is your job as a medical provider to find those answers. I understand that the American healthcare system is flawed, but it’s up to you to advocate for your patients.
Profit should never come before people. Consider organizing and creating a doctors’ union to fight for both your patients and yourselves. If nurses can do it, you can, too.
My faith in medicine has been shaken by years of suffering needlessly. Wrong diagnoses and ineffective treatments have caused immeasurable damage. Not just physically but mentally and emotionally as well. Where is the medical curiosity? I know you are tired and burned out, but so are we, your patients. The difference between us is when I mess up at work, or ignore a vital duty, no one dies. Our lives are literally in your hands. Ignoring us and dismissing our concerns is not the solution. Speak up to board members and CEOs. You have the power to make a difference.
Building Trust and Rapport
Doctors should be able to spend more than ten minutes with a patient. They should never be threatened with legal action for calling in sick or taking a mental health day.
Patients need more time with their providers. Taking the time to thoroughly examine, discuss, and teach is crucial. Google should not be our only teacher about our conditions or test results. Trust and rapport should be built between patients and providers. It’s disheartening when a medical assistant interrupts a symptom description or while the patient recieves a diagnosis because the doctor is running late.
Access to better preventative care and education is also essential. I’ve been to numerous physical therapists who have inadvertently caused me harm because they didn’t have the time to evaluate me properly. As a patient with Ehlers-Danlos Syndrome, I require specialized care, and this should have been recognized earlier to prevent unnecessary pain.
A Call to Action
The United States ranks poorly in terms of medical care quality, access, and overall care. This is not how it should be. We were promised innovation, yet the system remains broken. We were promised short wait times, but it took me five months to get my son into his established specialist. He can’t sleep or breathe at night and is suffering as a result. It’s time for medical professionals and patients to stand up and fight. Fight the insurance companies, fight the hospital CEOs and investors. Medicine should never be for profit. We as a society need to say “no more.”
Fight for your patients, fight for yourselves, and fight for better medical care. Together, we can make a difference.
- Do Disabled People Get Labeled As “Creeps” More Frequently Than Non-Disabled People?
- Exploring Neurodiversity in TV: Authentic Representations and Ongoing Challenges
- 10 Famous Authors with Ehlers-Danlos Syndrome and Neurodivergence You Should Know About
- 10 Essential Tips for Thriving in the Summer Heat with Disabilities
- Understanding Neurodiversity: What Psychotherapists Need to Know
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