I’m not writing this because I want to. I’m writing it because I’m tired of being ignored or put last and because it has to be said.
If you’re disabled, you know what I mean. You ask for something necessary, sometimes even urgent, and you wait. You follow up, you remind them again and you keep chasing the issue. And still, nothing.
It’s not just about delays. It’s about how little people seem to care.
This Isn't Rare. It's Constant
You can say, “I need this supply to prevent infection.”
You can say, “This medication keeps me out of the hospital.”
You can say, “I’ve already submitted the paperwork or asked for this three times.”
And they’ll nod. They say they’ll take care of it. They say they'll call you back in one or two days. They'll call it in to the pharmacy or the medical supply vendor. And then they don’t.
Here’s what that looks like:
• A patient calls their doctor’s office to renew a prescription for mobility aids. The staff says they’ll send it to your medical supplier by the end of the day. A week later, nothing’s been sent. The patient calls again. Still nothing.
• Someone with a chronic condition requests a referral to a specialist. The clinic says it’ll be processed within 72 hours. Two weeks pass. No referral. The specialist won’t see them without it.
• A disabled person needs documentation for insurance to cover essential supplies. They submit the forms. They follow up. They’re told it’s “in progress.” Meanwhile, they’re rationing equipment that’s supposed to be used daily.
This isn’t rare. It’s constant. And when you live with a disability, care isn't optional. It's survival for you.
People talk about burnout in healthcare. I get it. I really do.
Since COVID-19, doctors have been overwhelmed. Nurses are exhausted. Receptionists and customer care representatives are dealing with angry patients and their family members or caregivers all day long. I understand the pressure and the emotional toll this takes on staff working in hospitals, doctors' offices and clinics. I also know the system is broken. I've seen it my whole life. I've been dealing with it my entire adult life.
But when you’re in a role that affects someone’s life, you don’t get to be indifferent. You don’t get to treat disabled patients, or any patients, like we’re asking for favors. You don’t get to ignore what’s urgent because you’re tired or over it.
Well, guess what? I’m tired too so you're not the only ones!
Tired of chasing down care.
Tired of contacting doctors only to get ignored, delayed or having to repeat myself again and again.
Tired of being forced to advocate for myself because someone “forgot” or “got busy.”
Tired of wondering if I’m being dismissed because I have a disability or just because the system is broken for everyone.
I’ve seen non-disabled people struggle, too. But for disabled patients, the barriers are overabundant, the delays are longer, and the consequences are more dangerous. Some disabled people get thrown into nursing homes only to get neglected or even die because they didn't get the care that they deserved.
We need more medical professionals who can handle pressure without defaulting to bias. We need better management in clinics that are clearly failing their patients. Because bad management isn’t just bad business. It’s bad medicine.
When Indifference Becomes Dangerous
I ended up in the hospital and almost died before having emergency surgery done by a surgeon I had just met because my own doctor had no idea why I was having horrible headaches and released me before I had to be transported back to the hospital less than 8 hours later. During an ER visit, I've been in pain for far too long because they were overwhelmed. On another occasion, I was pushed out of the ER after only 3-4 hours (including the time spent in the waiting room) because they thought giving me antibiotics was sufficient without doing tests... or even putting in an IV! As a result, the doctor I followed up with didn't have all the information he needed and had to do his own tests. Quite often, if you have a disability, they'll pretend to listen, maybe give you a pill just to get rid of you then it's wham, bam, thank you, ma'am!
I realize that giving care to people can be costly so that's how hospitals and clinics prioritize patients. I was told doctors don't make a lot of money treating disabled people so here we are. Disabled people are real people. They have real lives. Disabled lives do matter!
If you don’t care, you shouldn’t be in the job. If you can’t prioritize what matters, you shouldn’t be making decisions that affect someone’s body. And if you think disabled people should just wait quietly while you get around to it, you’re part of the problem. Now, let me stress this isn't only about people with disabilities and their healthcare. My concern includes every person, even one without a disability. Care should apply to every single person, whether they're disabled or abled, young or old.
This isn’t about one bad experience. It’s about a pattern. This is a new culture that treats disabled people like we’re not worth the effort.
I’m not asking for perfection. I’m asking for basic responsibility, compassion and empathy. I’m asking for people to care enough to do what they said they’d do. I see this with many people, not just those with disabilities, although with people with disabilities, it's worse because we're "too hard to deal with" or "not worth it." And if that’s too much, then maybe they shouldn’t be in healthcare at all. It's sad that doctors feel like they get to choose their patients. That just makes it harder for patients to get the care they deserve. All people deserve care equally. All people have a right to their health.
I get sick and tired of doctors acting like they don't want to be there at work. It's as if they do it just for the money. Believe me, "just doing it for the money" isn't good enough to do an adequate job, actually helping people and making a difference. If you're going to do a job, do it with passion. Many hospitals, doctors' offices and clinics are so busy focusing on profits that they're not stepping back and looking at the big picture. I get it. Money keeps the business going. It keeps places like hospitals, clinics and medical practices open so they're reliable on insurance companies. It's good for the economy. Money makes the world go around. But what about people?
And I get that the system is broken. Lots of phone calls, lots of patients and not enough doctors. People in the healthcare system are exhausted. Even receptionists and customer care service representatives are tired after having to deal with upset patients and family members all day long! For me, it's tiring as well because I often have to repeat personal information that's already in the system! When I'm told I need a prescription from a doctor to start a treatment or even physical therapy, I have to be the one to get it, rather than them getting it themselves and they already have the doctor's phone numbers in their systems! I also deal with a lot of bureaucratic issues and they're worse when it comes to insurance companies and having access to treatments, as if it's not already more difficult for someone with a disability! So why stress them out even further when they're already dealing with a disability, a serious illness or a chronic medical condition that no one has found a cure for?
The elderly and people with disabilities are dying because of barriers that are too much for them. The biggest issue is bias, prejudice and lack of empathy for all people who come into the doctor's office, a medical clinic or a hospital.
• Disabled adults are nearly twice as likely to die as nondisabled adults due to delays, dismissals, and lack of access.
• Older adults with disabilities face risks caused by age, chronic illness and just simply systematic negligence and failure.
• Insurance issues, inaccessible clinics, and provider bias make timely care harder to get, and the consequences are fatal.
Sources:
5 Key Facts About Medicaid Eligibility for Seniors and People with Disabilities | KFF
Accommodations Aren’t Optional
Then there are accommodations. Sign language interpreters, lowered exam tables so you can transfer in and out of your chair or forms with braille. Half the time, I see them rolling their eyes or sighing when an accommodation is requested. That's when I know that so many people in the healthcare industry don't care to bother (fortunately, they do it anyway). It's great they do it but it's their attitude that tells me a lot. By law under the "American With Disabilities Act of 1990," health professionals are required to provide accommodations and easier access to healthcare as requested by the patients. Easy access to healthcare without all the red tapes involved is a human right and that applies to all people of all disabilities and ages. It should not be difficult to have healthcare for anyone.
Too many people, especially those with a disability are being left alone, being untreated or even dying because of lack of sufficient care. This is a system that needs to be fixed. This is not a glitch. This is failure. This is not fine as it is now, and something must be done... NOW.
- Pay doctors based on patient outcomes, not just quantity of services.
In other words, pay based on quality, not quantity. Patients can discuss their conditions with their doctors more and tell them their concerns and ask questions, doctors can better coordinate the care between specialists and other physicians and patients can get better preventative care.
- Pay doctors more to actually listen, care and coordinate. I believe this was discussed plenty earlier.
- Reduce administrative burden.
It's easy for doctors to get burned out by non-stop paperwork and there's always prior authorization required by insurances. If we reduce the prior authorization required by insurances, doctors can do less paperwork and even make less phone calls and doing whatever it takes to get the insurance to pre-authorize treatments or medical equipment without headaches and emotional exhaustion. Less paperwork and smarter technology can help, too and we're fortunate that AI has gotten really popular. Although there are flaws in AI or using recordings.
- More specialized services or clinics for complex patients.
I'm a complex patient. People with disabilities can require complex care but there are many doctors who don't specialize in areas that take up extra time unless they're passionate about them. Spina Bifida would be a great example. Across the country, there are clinics for patients with Spina Bifida but mostly for children. There aren't enough clinics for adults with Spina Bifida and there aren't enough physicians who understand in depth certain disabilities and how they affect their bodies. If we had more healthcare professionals who were passionate about people with disabilities or patients who need complex healthcare, less people would have problems navigating the healthcare system in general.
- More transparency in insurance policies and doctors' intentions.
Insurance companies are always changing their policies so patients have to take the time to keep up. They have to start reading the fine prints and know of any hidden exclusions. Confusions with the insurance companies only causes delayed care and exhaustion. It took me a long time to finally decide not to use an insurance company for a service I needed because the insurance company had a policy and billing codes that an agency didn't want to follow and an agency I was trying to use was supposed to be the best.
Then there's the doctor's intentions. He's passionate about treating heart disease in older people but not in younger people with a disability. While bios and patient feedback are great, not everything you need to know is there. He sounds great, caring, very knowledgeable about the urinary system when you read his bio or hear from other patients. However, once you get there to meet the doctor and he tells you he doesn't work with patients who suffer from a complicated kidney issue, you leave his office and reconsider coming back ever again.
Empathy Isn't A Luxury. It's A Skill
You don’t need a higher billing code to say, “I hear you" or a perfect system to treat someone like their life matters. You just need to show up and do your job that includes genuinely listening and caring. I get you're not getting paid big bucks doing that but that's the basis of healthcare. It's not about slicing people up or shoving tubes and instruments in them.
Empathy isn’t just about being nice and caring. It’s about being competent. It’s not about rolling your eyes or emitting a sigh when someone asks for an accommodation. It’s about not dismissing disabled patients because we’re “too complicated” or “not profitable.”
Call to Action
- If you’ve lived this and you’ve had to chase down care, explain urgency to people who should already know, or felt invisible in a system that’s supposed to serve you, say something.
- Be proactive, be assertive. You don’t have to be polite. Just be honest. Disabled lives matter but to so many people, we don't matter.
- Because silence protects the people who keep failing us. And disabled patients deserve better than being ignored.
- Speak. Write. Push back.
- Reach out to your federal, state and local government to call for a better health care system that actually works for you! Silence gets you nowhere and it can even be lethal for your life.
And if you work in healthcare: Listen. Care. If you do, fight for your patients. Or step aside. You're affecting people in a poor way by staying just because of the money and no care or passion. Just ask yourself: Why am I a doctor or a medical professional? Did I really put in 8 years of education and training just to show up at work and pretend to care because I'm tired of all the red tapes and just need the money? Yes, many complaints you get might seem ridiculous or going too far but that's because those patients are sick and scared.
I once came across an article of 10 questions that patients often ask their doctors. Sure, some of them were a bit much but I understood their feelings. They're scared and worried about their health or their loved ones. I felt like the doctor who wrote the article was condescending and he was probably over it. I was tempted to leave a message at the bottom of the page and tell him to get out of the medical field and change careers!
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