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When you have a health issue that can’t be treated with at-home remedies, most people will go to the doctor to get it checked out and we can only hope that our doctors validate our pain but unfornately that is not always and sometimes you’ll get someone who prescribe weight loss as a cure for every medical problem. It can be empowering to have a doctor that listens to you, as it can make doctor’s appointments a little less scary but sometimes it can be hard to find a doctor that takes you seriously. I do not expect my medical team to cure Spina Bifida, as that would be an unfair expectation but I cannot stand ignorant doctors who think they are the smartest person in the room just because they have a medical degree and I don’t. As a disabled person, I have to go to the doctor more often than most people and it can be difficult when you go to the doctor with a visible disability because people often it is assumed that you are unable to advocate for yourself and sometimes people ask my caregivers things that they should be asking me. It is not acceptable for a doctor to be rude to a patient unnecessarily, just because they don’t have an explanation for their pain but sadly, this happens all too often in healthcare. A doctor who listens to their patients is incredibly important, as people are less likely to seek medical help if they constantly feel shamed. So, how can you get your doctor to listen to you? In this post, I will talk about how I build trust with my medical team and get them to listen to me.
Bring an advocate with you to your appointments – When you are disabled, sometimes you will have a doctor who treats you the same way they would treat their able-bodied patients, but this is rare and often times, when people see your disability, they assume you can’t speak. If you are a caregiver accompanying disabled loved one to doctor’s appointments, there is nothing wrong with asking questions, but I urge you not to answer questions that the disabled person themselves know the answer to because if you do all the talking for me doctor assume that I am unable to answer questions. My mom takes me to all my doctor’s appointments, not because I couldn’t do it myself and if wanted to, I could take the accessible bus, but it can be helpful to have advocate with you. I am capable of answering a majority of the questions my doctors ask me without difficulty but there are times when I don’t know the answer to something, and my mom asks questions that I may not have thought of. When I first started experiencing daily headaches and migraines, it was not easy to find a medication that worked and my neurologist was about to tell me to live with the pain, which would have been difficult to do with that level of severity. At the time I was experiencing chronic daily headaches that made it difficult to get out of bed and I was not upset about the fact they didn’t know but it was infuriating to me that someone would say it in such an insensitive way that I couldn’t articulate. Lucky for me I had an advocate with me that was not about to accept that we have tried everything because I was about to accept that there was nothing out there to help alleviate my migraine pain. If you are struggling to get your doctor to listen to you, I encourage you to bring an advocate with you because when you are disabled, sometimes doctors are more inclined to listen to an able-bodied advocate than to the actual disabled person themselves.
Listen to your doctor – Doctors should always have your best interest at heart and give you recommendations that they believe will improve your health, but not everyone listens or takes these suggestions. I feel blessed that, for the most part, I have had good experiences with doctors, as it is rare amongst disabled people. The main reason I have such a good relationship with my medical team is because I am not known as the patient who is constantly going in for the same avoidable health issue. I am not suggesting that you need to follow everything your doctor says without questioning it because doctors make mistakes but if they give you a suggestion that is reasonable you should listen. As a patient, it’s important for you to know why something was prescribed because patients are more inclined to listen to their doctor’s advice when they know the reason behind their doctor’s recommendation. It can sometimes be difficult to remember to take all your medications, and I am not perfect, but I do my best to remember and don’t lie to my doctor when I have been slacking because honesty builds trust in your medical team. Listening to your doctor is an easy way to get your doctor to like you and take your seriously.
Be kind – Some doctors can be total jerks, and I am not suggesting that you need to suck up to your doctor and tell them that they are doing a great job when they are gaslighting you. Doctor’s appointments can be very stressful for disabled people with a lot of health challenges, and sometimes, people get frustrated with test results and yell at their doctors because they don’t like the information that is given to them. If your doctor is being rude unnecessarily, I am not advising that you take the abuse because it’s not acceptable for patients or doctors to be rude unnecessarily, but a little kindness can go a long way when someone is trying to help. Doctors are always putting up with people that are constantly yelling at them for no reason and if you are not known as that rude patient, it builds trust in your medical team.
Get a second opinion – There is nothing worse than waiting months to see a doctor, only to find out that they are a total jerk and do not know a lot about treating your disability. When you are disabled, it can be harder to find a kind, knowledgeable doctor that treats your disability, and you may go through a couple of bad apples before you find someone who resonates with you. I want to remind you that you are not tied to your doctor and it’s okay to seek a second opinion if you think that your diagnosis is incorrect. If you are not happy with your diagnosis, look for a new doctor because although sometimes it may take some time to find someone else, you are not tied to your doctor and can seek a second opinion.
Make a formal complaint – I have never had to write my doctor a letter to complain about the horrible care they have given me because most of my experiences in healthcare have been positive ones but if I had to, I would. There are no guarantees that your doctor will read your letter of complaint or make an effort to ensure that you are treated better next time, but they will have knowledge of it, and you won’t know if you don’t try. The worst thing that can happen is your doctor does not apologize, and you end up seeing a new one but at the very least, it can make them aware of their actions and give them the opportunity to do better. Silence is what most of us would want to do when we have bad experiences, but people will not know that what they did is not okay if you don’t tell them. If you are going to write a letter of complaint, be professional because it won’t be taken seriously if it comes off too whiny.
Start crying- Patients are sometimes told to live with the pain, and although I do believe that it is an insensitive way of saying “I don’t know,” I also think that some doctors don’t truly understand how our conditions affect us and see nothing wrong with their choice of words. Tears will not work for every doctor because sometimes you will have a doctor who is very adamant about their recommendation and will not change their mind. However, if you have a doctor who is a decent human being, sometimes you can reach their soft spot and persuade them to try something else. I am not usually the type of person to cry at the doctor because it can attract attention, but if I need answers, I am not beneath it, because the worst thing that can happen is that it doesn’t work. Crying is not always an act, and sometimes people are so upset that they can’t control their emotions.
Doctors’ appointments are stressful for anyone, but it can be even more stressful for disabled people with multiple health challenges, and it doesn’t help when you have a doctor who is not listening to you. It is important for patients to listen to their doctors, but it’s equally important for doctors to listen to their patients because even though you studied my disability, I live with it. It is not acceptable for doctors or patients to be unnecessarily rude because even though you are frustrated with your results, it’s no excuse to take it out on your medical team, who is trying to help you. Disabled patients sometimes experience a lot of trauma during doctor visits, because there is a lot of ableism in healthcare that negatively impacts patients and makes people not want to prioritize their health, but this could change if people started listening to disabled people. A good doctor-patient relationship is so important because in healthcare you should be working as team but it’s not going to feel that way if one person thinks their advice is superior. How do you get doctors to listen to you?
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