Medicine and the practice of it is a great thing. Without it, I probably would've died four or five years ago. I'm very fortunate to have an amazing team of doctors who manage my case and make sure I'm not only healthy, but happy and thriving. Unfortunately, this hasn't always been the case though.
I have frequented many hospitals and countless doctors' offices since the age of nine—seeing specialist after specialist, and undergoing test after test to get down to the bottom of my mystery medical condition. To be nine years old, and going through things most adults can't comprehend is one of the scariest things a person can endure, let alone a child. After every single visit and every single test or procedure, I would go home thinking that I, without a doubt, was going to die.
For a while I would bottle everything up, trying to come to terms with what I thought was my inevitable end. Soon enough, I'd break down though, and my mom would ask me why I was crying. My answer would usually be something along the lines of "the doctor said this which means I'm going to die or something else really bad will happen," or "the doctor wants to do this test/procedure, and if the results are positive/the procedure doesn't work then I'm going to die or something else really bad will happen."
Luckily, my mom is pretty good at remaining level-headed when it comes to the medical field, and she would properly research my situation at that point in time and give me a watered-down child friendly version of what was happening to me—giving me reassurance that everything would be okay, but staying realistic and letting me know that there are certain things that'll happen that aren't necessarily good, but would be appropriately dealt with if they were to arise—something that many doctors I encountered weren't doing, only viewing me as a medical condition and not as a person with a medical condition.
Growing up in the medical field with a life-threatening condition forced me to mature faster than my peers, allowing me to cope with and better understand my situation. I've even seen this in the case of a four year old cancer patient I shared a hospital room with. He was so young, but he had an understanding of what was happening to him, because his situation forced him to mature in order to cope.
The more informed and educated I became, the more my parents felt it was appropriate that the doctors should talk to me instead of speaking to my parents as if I'm not in the room. When it comes to pediatrics, in my experience, many doctors talk to the parents instead of the child, because most medically inclined situations are too complicated and mature for kids to understand. From my personal experience, and encounters with other people in my age group dealing with medical problems, we are going through very "adult-like" issues, and we've learned to go into doctors' appointments with more mature and "adult-like" attitudes, as well as not to fear everything the doctors say.
Over the years, my doctors' appointments would start off by telling the doctor that they could speak to me, and they could say everything in front of me because I fully understood my condition. I've worked with many doctors who have taken those words to heart and have treated me with kindness, respect, and compassion, but I've also worked with many doctors who let that statement go in one ear and out the other. The problem with not addressing me, the patient, and not explaining things to me in a way that I can understand, is that it makes me feel like an object, and nothing more than a medical condition that needs to be corrected, as well as scared and worried as to what is going to happen to me.
No matter what age a patient may be, communication with patients is key, and clear communication between doctor and patient will make for a more successful relationship when it comes to addressing and solving the patients' problems.
When I was 12-years-old, I met with a new doctor to oversee my case as I was about to go through an operation that was life-saving, but also risky. The first few times I met with her, I would always leave crying because I felt she was too intimidating and blunt. In hindsight, I wasn't scared of her as much as I was afraid of what she was saying. She never addressed anyone in the room, besides me. She knew I understood my situation, and she treated me as such. I think hearing everything she was saying made me realize just how real and scary everything truly was, but also how much greatness comes from medicine, and how there is also a lot of uncertainty—as every individual case is unique. She wasn't afraid to tell me what was going to happen to me, and things that were possibly going to happen to me. While the things she said scared me, they also brought me more on board with what I was about to endure, because I was then prepared for anything and everything that could happen, and it made me trust her more, as well as the other doctors overseeing my case—and today I wouldn't want to be treated by any other team of doctors, because they've established relationships with me that go beyond doctor and patient, and have always kept my best interest in mind, ensuring I'm always clear and comfortable with what's happening. Without that first doctor, I probably wouldn't be as happy and healthy as I am today. She opened up a clear line of communication between the two of us from our initial meeting, causing the rest of my doctors to do the same, and that has allowed them to know me as a person and a medical condition. However, they are always sure to view me and treat me as a person first and foremost, which was something that was very new for me, and very rare to find.
Having your body hijacked by any sort of illness/disease/disorder is one of the worst things anyone could ever have to go through. You feel like your life gets taken away, and you feel as if you're nothing more than the horrible things that are happening to your body. When people seek medical help, they are looking for answers and a treatment/cure, but they are also looking to be seen as a person, and not just a problem in the big book of medicine. It is a doctor's job to solve and treat the problem as effectively as possible, but it is also their job to put the well-being of the patient as the priority, and that can't happen without communication.
Recently, I paid a visit to the emergency room with severe chest pain. Based off of my described symptoms and certain test results, it was assumed that I either had a blood clot on one of my lungs, or Pericarditis—two things you really don't want, especially when you have a weak cardiac and respiratory system like myself. My doctor that I mentioned before, she has always been able to call, right off the bat, the problem at hand when it comes to me, and this was one of those situations. She said it was probably pneumonia, and to request x-rays to see if any traces could be found. I was telling all of this to the various doctors and nurses who were treating me, but it seemed as if whatever I said wasn't heard because before I knew it I had an IV shoved in my arm, and was being told I was going to have a CT scan, with a fair possibility of being prepped to stay overnight for observation. Little did these doctors know about the test results they had from me, what looks abnormal for an average person, is normal for me, even though it had been clearly communicated on my end that I'm not the typical case. If I hadn't gotten the emergency room doctors in touch with my team of doctors, they would've never truly taken my word, because I only have a medical condition and not a medical school degree. Once the line of communication opened, things became clearer and easier to deal with. After hours and hours of waiting, I was finally given the news that they did find traces of pneumonia, and I couldn't be happier—even though pneumonia for someone with my condition isn't such a great thing to have, but it was better than the other two things it was suspected to be.
Despite the rather good news, and experiencing the joy of getting to go back home after fathoming the thought of having to be admitted to the hospital for 10 hours, I still had this unsettling feeling from the whole situation. I felt like everything I said was ignored, and as if the doctors thought I didn't know my body or condition as well as they did, even though I know what's normal for my body better than they do. I felt angry and frustrated over something so small, all because of the lack of communication—a problem that goes all too unnoticed in the world of medicine.
To all current and future doctors, and any other health care professionals: please don't overlook how important communication is. You're treating a person with a problem, not a problem that is in the form of a person. Medical problems are scary, and doctors can be intimidating. A patient's emotional treatment is just as important as their physical treatment, and making them feel comfortable and at ease will greatly improve the course of treatment, and perhaps even the prognosis.
To all the patients out there: you also have to make sure there is communication. Doctors are smart, but they're not mind-readers—they don't know if you're uneasy about something unless you say you are. You have to hold up your end of communication just as much, if not more, than the doctor. Advocating for yourself can be scary, but it's necessary and will show to be extremely useful in the long-run.
No, I am not a doctor or any type of certified of medical professional. However, I've worked with enough doctors to know that the ones who have treated me as a person, as opposed to a medical problem, are the ones I've had the most success and comfort with. They're the ones that are always happy to see me, because reading about me on paper immensely differs from seeing me in person. What they see on paper is someone who has an unknown and undiagnosed muscle myopathy, accompanied by Restrictive cardiomyopathy, Restrictive lung disease, and all of the tests and procedures I've been through. Who they see in person, though, is a healthy looking 18-year-old girl, accompanied by a wheelchair and ventilator as badges of perseverance, and signs of successful treatment. The person on paper and the person they see are completely different people, and seeing that shows them all of their time and care spent on me is one of their success stories, and it's a success story because we gave each other the trust and openness needed in order to create a different and improved version of the patient they see on paper.
There's no harm in getting to know your patient more as a person instead of the medical condition they appear as on paper, and there's no harm in getting to know a doctor beyond their credentials and abilities. Communication will make for an incredible doctor-patient relationship.
Communication will be more important than any test or procedure, and communication is what will be the greatest treatment against a diagnosis. Communication might just be the most successful and effective form of medicine.
