Healthcare System: The Added Woes to Patients

After 13 years of dealing with a chronic illnesses, what surprises me most is that I'm still surprised at how the healthcare system manages (or doesn't manage) patients. With a year of medical school stuffed into my brain and a summer filled with strange, new symptoms, I find myself marveling over how our society deals with someone with a chronic disease.

First off, I have so much respect for people who enter healthcare for the right reasons and truly devote themselves to helping others. If you are one of those people, please know you have my deepest gratitude; you make more of a difference than you can possibly know.

For those whose job is purely a job, I only ask for more patience and perhaps a touch of empathy. For some employees, dealing with patients is an 8-5 weekday job with vacation and holidays. 

I don't receive a break from my disease. It is with me 24/7 regardless of my plans or vacations. My illness does not slow down when I have an exam coming up nor does it clock out when I travel. When I call, even if my issues deal more with quality of life, I really do need help. I am not trying to make your day harder. When I become frustrated on the phone, do not think that I enjoy the conversation any more than you do.

We say that our system tries to focus more on the needs of the patient, but this entirely depends on the clinic and individual healthcare professional. I know people may scoff and wonder what the big deal is. However, when trying to stretch every dollar and having an insurance that will only cover one specialist appointment each year, that one appointment means more than you can imagine. If you use your one appointment on a physician who has different beliefs on symptoms a patient should deal with, then that's it. No do-overs and you have another year of very uncomfortable and painful symptoms until you can try out another physician and hope that this year will not also be a waste.

As a patient, I find how different physicians code appointments for billing fascinating. I know doctors who bill for everything regardless of what the insurance will cover. Other physicians learn what insurances will cover and if it is something small, will not write down a small portion of the exam in order to save their patients some money. When I keep calling about symptoms and seeing if I can put off an appointment, I'm not trying to make your life difficult. I don't have endless income to afford several appointments and tests. Treating me as though I'm looking for free healthcare only makes me feel guilty about being sick.

What astounds me most during this time, is that physicians still exist who believe they have the right to tell patients to just deal with symptoms. After my fortune of dealing with several amazing healthcare professionals, I cannot stand a doctor who thinks they know more about my disease, my life, and how those two interact. I lived with this illness and my symptoms for much longer than any professional has learned about the disease in general, with much less time to learn about my particular illness.

In this past year, I learned that much more reform is necessary for patients to truly receive the care that we deserve as human beings. We are not cases from a textbook. We are not idiotic people who know nothing about our disease. We are more than a job.

The Power of One Doctor

As I make my way through medical school, I naturally look back to my own experiences. Due to recent health circumstances, I realize the immense impact of a single physician on a person's outlook on the medical profession and on their health.

In my own experience, three types of physicians exist. The ones who help you thrive, the ones you forget about, and the ones who make you worry every time you come into contact with the medical community.

My first GI doctor was the first. She challenged me to take control of my disease and to advocate for myself. During the two weeks following my diagnosis, she called me over her lunch break as the "poop patrol" to ask about my bowel movements (color, consistency, etc.), my symptoms, and what I ate. She then asked me to piece together as to how my lifestyle could affect my symptoms. Although I was 10, she forced me to quickly mature and to learn to listen to my body. Every appointment, she told me the same thing, and I will always remember it.

Although she was the one with the medical degree, she could never understand my personal disease. She told me she could only help me as much as I helped her to know what was going on in my body. No test or person could tell me what I was feeling or about the state of my health.

Every appointment she asked about my thoughts about my disease. She asked about my symptoms and what I wanted done. It didn't matter what the tests showed; she said they were a piece of the puzzle, but no where near as important as how I felt.

This physician taught me to trust in myself and my body. She taught me to understand what my body told me and how to figure out what triggered symptoms and how to try to avoid those triggers.

For several years, I had a doctor who was the last of the three described types. When I came to him, I was experiencing the most intense symptoms of my life. After going through clinical studies and finally having 25 centimeters of my intestines removed, we thought I was in the clear for awhile.

However, within a few months, symptoms reappeared in full force. My physician never thought much of my worries. It was only through determined insistence that he would alter medications. When one medicine gave me full-body, medicinally-induced psoriasis, his only response was that he hoped I could handle it and gave me a prescription for anti-itch cream.

I took it upon myself to fix my disease. My physician was no longer a team player, so I educated myself as best I could. I attended conferences, spoke with doctors from around the country, and ended up learning about many different alternative medicines. I saved myself with the help of many other medical professionals, but not with that doctor's help.

About a year later, symptoms picked up and I spoke about my worries every appointment (I was on a clinical study and had monthly appointments/injections). After nine months of begging for something to be done, my physician finally said he would do something. At that point, however, any trust we had was gone. During those nine months, he told me my symptoms weren't that bad and he thought I could live with them. He thought that maybe they were in my head and several times suggested a consult with pain management because he thought my body was trained to always think I was in pain. With him as my physician, I constantly doubted myself and my body. I would leave for my drive back to school crying because I didn't know if my doctor was a jerk or if I had a psychological problem.

I switched to a new physician at the clinic who looked at my records and couldn't believe how long this had been going on. Two tests later, and we found a treatment. Those nine months didn't have to occur and none of it was in my head, but it continues to affect my healthcare.

Now, when I feel ill, the first thing I tell my fiance when he says I should call my doctor is my worry that the doctor won't believe me. I don't want the physician to think I make up stories for attention. All of the work my first physician put into me to trust my body and my symptoms was washed away by one physician who couldn't be bothered to take the time to really listen to me. Rather than talk to the physician when I'm sick, I take it upon myself to try to lessen my symptoms because I don't believe a GI will help me.

I hope patients don't allow one physician to compromise their health. We need to advocate for ourselves and I learned my lesson about getting a new physician as soon as the relationship turns sour.

For future physicians, I hope you learn the humility of realizing the patient knows more about their disease than you ever could. I hope you take the time to really listen to your patients and to help them thrive.

The relationship between a patient and physician is so critical to a patient's entire well-being. I hope that future changes in the culture of medical care allows for patient experiences to matter and to inform the doctor just as much, if not more, than the actual tests.

Learning to Say No: How I manage medical school with an autoimmune disease

Let's be honest. Most people accepted to medical school are over-achievers. Not only academically inclined, they tend to be over-involved in volunteer work, leadership positions and often have TA'ed for a pre-med course or two. Pre-med students are the first to volunteer and the last to leave.

Once I found my footing in college, I became that student. I worked 15 hours a week, volunteered 10+ hours a week, worked on independent projects and carved a name for myself among the faculty. Naively, I thought medical school would be the same. Through strict lifestyle choices, I would continue to excel in every aspect while still enjoying life.

When classes began in August, I thought for sure I would be enjoying a full plate of activities by mid-September. However, tragedy struck my family at the end of August and I needed to deal with the grief of losing my brother.

As the semester continued, I kept wondering where my time went. If I was going to continue to be active in extra-curriculars, I needed to find the time to participate. After each block of exams, I told myself I would find the time in the next block. However, each exam brought on a mini-flare and I would take time afterwards to relax and bring my body back to a healthy state.

Professors and physicians continuously tell me they hope I can overcome the challenge of having a chronic disease during medical school. I didn't understand that until recently. Although I want to be heavily involved in other activities other than academics, I need realistic expectations about what my body will allow me to do. The most important part of being a doctor is learning the information that will allow me to help my patients. My experience with Crohn's disease already taught me more than any person can about interactions with patients. Right now, I need to focus on staying healthy, and doing the best I can academically.

As much as I hate to admit it, I need to say no to many more things than I can say yes to. Thankfully, I found my way into working with the CCFA on projects and another student excited to start a young adult support group. This way, I can be involved with helping others, while still finding the support I need to overcome my disease.

In a disease that is so dependent on low stress levels, I've learned to truly plan my time and understand my capabilities. Although I'm not as involved as many of my classmates outside of school activities, I have as much on my plate as my body can handle. And I'm okay with that.

Once, I thought I would be spending these four years taking Madison by storm. Now, I'm excited to continue to learn about the human body and how to make it well, along with continuing to fight for my own health. I will survive and I will become the best physician I possibly can.