What Disabled And Chronically Ill Patients Want Their Doctors To Know

When you are a disabled or chronically ill patient, sometimes it can be frustrating to go to the doctor because it can be difficult to get your doctor to listen and take you seriously when you are disabled. Doctors spend years studying diseases and have more medical knowledge than the average patient, but they don’t know everything because you are never going to fully understand a disability you have never experienced. Disabled and chronically ill patients sometimes are very bitter toward healthcare providers because disabled people often are gaslit more than non-disabled people, and I think the main reason for that is that doctors sometimes lack understanding. Doctors learn a lot about various medical conditions because they have to know certain things to be able to help people, but medical school doesn’t teach everything, and there are a lot of things that I could probably teach my doctors about Spina Bifida that they didn’t learn in school. In this post, I am going to talk about a few things that disabled and chronically ill patients want their doctors to know.

You only see a small fraction of my life- When you are in pain, sometimes it can be difficult to get doctors to understand what you are going through because they are only with you for ten minutes and do not see how your pain negatively affects your life the other ninety-nine percent of the time. Most days, when I go to the doctor, I am having a good day, but just because I look well, that doesn’t mean I am a faker; for all you know, I could have been bed-bound for the last three days with crippling pain. If there is one thing I wish doctors could understand, it’s that they will never truly know what a patient is going through because there is no class that can teach you that. You only see a small fraction of my life, and I promise you that I am dealing with challenges you cannot see. It would change healthcare if more doctors understood that you only see a small fraction of my life and don’t know my body better than I do. Fakers do exist, but just because someone doesn’t look like they are in pain, that doesn’t mean they aren’t, because people in pain aren’t drug-seeking but relief-seeking.

Talk to disabled people, not their caregivers – It can be frustrating to go to the doctor as a disabled person because sometimes doctors will talk to your caregivers and not you directly. Some people are not able to advocate for themselves and may need someone to advocate for them, but most disabled people are very capable of answering their doctors’ questions. Please talk to disabled people themselves and not their caregivers, because I only bring someone with me to medical appointments because my physical disability prevents me from being able to drive. There is nothing worse than when doctors are ableist and talk down to disabled patients, which is the reason why a lot of disabled people are bitter toward doctors. Most disabled people do not need someone to talk for them and can probably give you more information about their symptoms than their caregivers will ever be able to.

If it’s not accessible disabled people can’t access it– In my experience, doctors’ offices and churches are two of the most inaccessible places for disabled people. Doctors should be one of the most accessible places because disabled people have more health challenges than non-disabled people, and they are going to be your most repeat customers. People sometimes think that not a lot of disabled people exist because they don’t see a lot in public, but that doesn’t mean we don’t exist, and you have to account for all the people who can’t leave their homes or have invisible disabilities. Doctors’ offices need to be more accessible because we can’t go to the doctor if it’s not accommodating of our assistive devices. Disabled people shouldn’t be putting off medical appointments because they are afraid it’s not going to be accessible, but often are.

Not everyone with severe pain cries endlessly– When you go to the doctor in pain, sometimes it can be difficult to be taken seriously because it is often believed that everyone with severe pain cries endlessly, and if you are not crying, it must not be that bad. Some people in pain cry a lot, but not everyone does, and you shouldn’t judge someone’s pain levels by the amount of tears that are shed. People with chronic pain are used to being in pain all the time and often will not cry, but that doesn’t mean we have low pain levels and are cured. Listen to people in pain because some people have higher pain tolerances and will not cry on bad days. I think that people who suffer in silence and don’t have visible tears can be more worrisome than someone who looks like they are in pain. Never assume that someone doesn’t have severe pain because they are not crying.

The pain scale is not the best way to measure pain- The pain scale is a common method that doctors use to diagnose pain so they can come up with a treatment option. I think that the pain scale has its place, but I don’t think that asking someone to rank their pain is the best method for everyone because some people experience much higher pain levels on regular basis than the pain scale will allow. It can be difficult to know how much pain is affecting someone’s life by a number because everyone has different pain tolerances, and a three on the pain scale for me might be a ten for someone else. It is so important for doctors to understand their patients’ pain, but there are better ways to diagnose pain without asking someone to rank their pain. Start asking people how it affects their daily life, because knowing that will give you more information on the severity of someone’s pain than any number ever will.

Telling us we should exercise more is not helpful– When you are disabled, it is easy to gain weight because you can’t exercise to the extent a non-disabled person can, and sometimes doctors will tell us that we need to exercise more. Exercise is important for both disabled and non-disabled people, but telling a disabled person to hit the gym without any guidance often is frustrating and not helpful. Fitness is not accessible, and sometimes disabled people want to exercise but have no idea where to start because there are very limited resources. Teach disabled people how to exercise or direct them to someone who can, because shaming someone for not exercising won’t help them.

You will never understand a disability you have never experienced- Medical school is hard, and sometimes doctors are arrogant and will shove their degree in your face because they think they know more than you. Patients can help you be a better doctor because we can help you better understand our disability and teach you things your textbooks won’t. Doctors work long hours, but at the end of the day, you get to go home while patients are constantly dealing with symptoms because disability doesn’t take a vacation. Living with a disability is harder than any class you have ever taken because we live in an inaccessible world, and you can’t walk away from it. It doesn’t matter how many years you have spent studying my disability, because unless you have my disability, you will never understand what I am going through. It is impossible to fully understand a disability you have not experienced, and that is okay.

Doctors can provide a better science lesson on someone’s disability than patients ever will, but patients can offer insights that a doctor can’t. It can be frustrating to visit the doctor as a disabled person because sometimes doctors think they know more about your disability than you do and will talk down to disabled and chronically ill patients. There are many issues with healthcare, and not every problem is the fault of the doctor, but sometimes it is the government preventing doctors from being able to prescribe effective pain management. Medical appointments are stressful, but we can alleviate some of that stress by simply listening to patients and trying to be understanding because a little compassion can go a long way. Disabled people shouldn’t be afraid to go to the doctor, but many are because they carry significant medical trauma from multiple bad experiences. Patients and doctors both play an important role because you are a team, and if it doesn’t feel that way, then find a new doctor. What do you wish your doctor could understand? If you liked this post, please leave a comment below and share it with your friends.

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