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.

Status: Lab Rat

I have learned many disturbing things about our medical system as a lab rat.

Currently, I'm on my second clinical study; when no other options exist, clinical trials can feel like a godsend, especially if the medication works.

No one tells you what it's like to be on a study when you need more help than purely receiving the drug. After finishing my undergraduate career, I will move to another state. Months ago, I asked the nurse on the clinical study about switching to a closer clinic. Her original response was that it wasn't possible. Thankfully, my boyfriend said that you can usually transition and I pushed. Finally, she gave me a website and told me I needed to look up whether the clinical study was offered near my medical school. I was flabbergasted. As a health care professional, was it not her job to help me? I called a nurse I trust, and she helped me locate other sites.

The clinical study nurse then checked into that site and told me I was unable to participate in a clinical study there. She said I could continue going to the same clinic I've attended - four hours away from my medical school. For monthly visits in which I would need to miss class, this option seemed unacceptable. She said I could call the insurance company and see if they would cover this experimental drug - I have now been talking with the insurance company for over an hour, and still have no answer.

To many people, this situation may seem reasonable. The nurse has done her job and now it's time to do my part. I don't know how to fully explain how difficult this situation is. After 10 years of never achieving remission, I have now been on a drug for over 2 years that, for the most part, keeps me out of the ER and reasonably healthy. However, that doesn't matter to the clinical study. I understand that data collection is important for the scientific process, but that doesn't make my life any easier. At what point are patients treated as people who deserve health just as much as anyone else? The coordinator has treated me as an expendable lab rat that has completed her time.

Even if I can convince the insurance company to help pay for this drug, I have no idea what dosage I'm on, or even how often I receive this drug. And although I will have to go off the clinical study, they will not release any of my personal information to me to help the transition. I will need to start from scratch with 2 possible dosages and 2 possible time frames. They will put me on the low dosage to start, but who knows if that will work. The danger of going off-label is that some people start a flare-up, become sick, and then potentially the drug stops working.

This system holds no compassion for patients. When I've spoken with people who work on the study and insurance companies and mention the importance of staying on a medication and dose that works for me, they don't even apologize. Their response is, "Oh well, we can't do anything for you."

I don't feel as though my health is important to these people - I know it's not them in particular; they're just doing their job. We have a broken system that doesn't help the people who truly need it.

As a lab rat, I've learned that science, over health and all else, is most important.

I Can

Recently, a friend told me her theory that people age themselves by telling themselves they're too old to do something. Rather than enjoying life, people let their age define them.

"I can't"

This seems like a simple phrase, but it has the power to stop a person in life. Many of us fall victim to these two words. For the last year, I have let Crohn's use these words to define my life. 

In November 2013, I reached my first non-surgically induced remission. I ate healthy and exercised every day. I never felt so alive. Then, a study abroad program (which I'll never regret), caused my disease to spiral out of control. As symptoms worsened, I allowed myself to eat whatever I wanted (telling myself that anything would make me sick). As the binge-fest continued, I became more fatigued and symptomatic; the summer of 2014, I rarely worked out.

The fall of 2014 became the worst time for me. At 21, I needed to wear adult diapers. I never exercised. I had pain all the time. I told myself I couldn't work out. I couldn't eat healthy because it wouldn't help.

Then, I switched physicians and my new medical team helped me find a new treatment plan. By January 2015, I started to feel better. However, months later, I'm still trying to find the perfect treatment plan, causing me to still have regular symptoms.
Although I've felt better these last few months, I've let "I can't" rule my life. I can't run as fast or far as I used to - I'm easily fatigued. I can't lift as much as I used to. I didn't want to do anything because I knew I couldn't participate in activities for the same length of time, or at the same intensity.

Then, I thought about what it meant to age oneself. By telling myself I couldn't, I didn't go to the gym. Obviously I wouldn't become stronger by sitting around in my dorm room.

"I can"

The start of this attitude has helped give back so much of my life. Rather than saying how much I can't do in an exercise, I tell myself what I can do. I can go outside and run until I'm tired. I can try higher weight sets. I can try.

With this attitude, and the help of family and friends, I can slowly feel my strength returning. I have set many new goals and stopped looking at what I used to accomplish. I have more important goals for my future that only present me can start achieving.

Health Discrimination

"If we wish to avoid being numbered amongst the oppressors, we must be prepared to rethink even our most fundamental attitudes" (Peter Singer "All Animals are Equal").

Some people argue that feminism is the last discrimination left for us to conquer. However, as Singer points out in his paper, we should never feel comfortable saying no forms of inequality still exist. In my Biomedical Ethics course, I realized there is a very real discrimination against those that live with a disease. I doubt this occurs intentionally; rather, people are ignorant that certain issues for which they argue display an underlying belief in the inequality between the healthy and those with an illness.

In the future, genetic selection can become a possibility for those considering to have a child. In this, doctors would create several viable embryos. At the eight cell stage, physicians study the genetic make-up of one cell. Then, a genetic map shows parents the risks of each potential child for developing  various diseases, or other superficial qualities such as eye color. Parents may choose which child comes into existence.

Some philosophers argue that this technology brings an obligation to the parents to genetically select all their children. "Couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being" (Savulescu and Kahane "Procreative Beneficence). In a debate on this topic, Savulescu argues that society would overall experience less suffering in the world should less illness exist.

Without a further look, this reasoning seems to make obvious sense. However, one must remember that this argument is to genetically select people before they come into the world. Imagine someone inserting race, gender, religion, etc. into this reasoning. Overall, males enjoy a better quality of life, therefore we should genetically select only for that gender. Society would then experience a decrease in suffering. Intuitively, we know this reasoning does not add up. I challenge you to see similar discriminatory qualities in the argument when you replace gender with health qualities. By selecting against specific illnesses, parents boldly state that people living with that disease are not worthwhile and do not wish to bring another person with that illness into the world.

A non-identity problem also occurs. An advocate for disability and disease, Elizabeth Barnes, writes, "Why choose negative selection? It can't be to prevent local harms, because it only makes sense to prevent local harms to a specific individual. But there is no individual that you are preventing harm to" (Barnes "Disbility, Minority, and Difference"). Take into consideration, genetic selection does not increase overall quality of life for any person (perhaps the parents, but I think it is unfair to discriminate so the parents can have less medical bills). Selection does take child x with disease x and then give you child x without the disease. Rather, parents choose to bring child y into the world. Implicitly, the parents have chosen child y because they believed child x with disease x would not have as good of a life. We can see that no benefit occurs to child x because child x does not exist. As well, child y does not benefit because child y had no disease in the beginning.

We run into many issues at this point. Savulescu's argument stated that parents should genetically select for healthy children because they would experience better lives. However, we see that no one experiences an overall better life. Some argue that the better life occurs throughout society. They say the world would experience less suffering, so genetic selection would ultimately benefit everyone.

I hope everyone can see the problem here. This states that by not having people exist that have an illness, the world would overall be better. People that believe genetic selection would decrease suffering wish those with illnesses out of existence. Child y makes the world better than child x. Most of us know at least one person managing an illness that is an inspiration to us or even to a large population of people. Could you imagine had genetic selection been possible centuries ago and we selected out the people who we assumed to have "less good" lives? Abraham Lincoln who was believed to have depression, Isaac Newton who is thought to have some form of autism, and many people that we admire today that manage illness. I think most people would agree that society would not have been better should these people not exist.

Savulescu states we should select children with the best possibility for a good life. Although this author argues we do not know enough about genetics to make this decision, people exist today that think selecting against illness(es) will better the lives of their children. This belief shows deep ignorance on the effects that illness has on one's life and is deeply insulting to those that manage a disease. Having a disease does not increase overall suffering in the world. Rather than taking measures to stop people with illness from existing, the medical field should focus efforts on cures for diseases. Then, child x can exist without disease x.

We can only stop discrimination by educating those that do not understand how their beliefs are offensive or show an inequality between people. If you, or someone you know, lives with a disease, spread the word that the world is better because we exist!

Find Autonomy through Depends

Autonomy

We all strive for this - the ability to choose what we do and when we do so.

I have always reasoned that I changed myself for myself, not for my Crohn's disease. Changing my diet to eating healthier and exercising everyday, I did that to feel better, not because my disease took control of my body. I chose to take the necessary steps to feel better and to live a more fulfilling life.

The past nine months have tested my ability to find happiness within a flare-up. From a summer of a liquid/soft diet to no longer running due to my constant need for a bathroom, Crohn's disease has tested my positivity, and definitely gotten the best of me at times. After 11 years of telling myself that my disease will never dictate my life, I am forced to buy depends.

Since my diagnosis I have always considered myself fortunate enough to rarely have an accident. I have found some interesting objects to use as a bathroom, but the point is that I usually save myself from the need of changing clothes.

This last month has taxed my patience with Crohn's. Weeks have passed since I have had bowel movements in the single digits throughout a day. My activities must involve nearby restrooms, just in case. I am too scared to run because the jostling will cause my bowels to become angry.

The decision to wear depends has been long and difficult. For whatever reason, I have continuously told myself that as long as I can make it to the bathroom, I have successfully kept autonomy even with a chronic illness.

Thinking about how I have lived this last month, I think that wearing them will help me regain control. Although I will still try my hardest to make it to the bathroom, I will no longer have restrictions to stay close to the bathroom. I will run again and have no fears about going for walks.

For many people managing Inflammatory Bowel Disease, having an accident can make the most significant negative impact on a person's life. Most people associate an uncontrolled bowel as someone who cannot truly live life. I am not proud of my need for depends, but I will not be ashamed that they will make my life easier.

The most important lesson I have taken from this decision concerns openness about your situation. I am fortunate enough to have a supportive boyfriend that will go with me to the store to buy my first set and has lifted me up through this difficult decision. My friends at school have helped me through the rough periods and provide constant encouragement. This is not something a person should keep to themselves to save face. No one should feel shame for using something that will make their disease more manageable.

Humans of Mayo Clinic

My school has started a "Humans of..." and it's been really cool to learn about what people are thinking and how those experiences affect their lives.

For anyone that knows me, they know that I love talking to strangers and learning about their lives, ambitions, etc. My favorite place to talk to people is Mayo Clinic because you never know where the people are going to be from and usually they have very powerful stories. I usually try to share those stories, but it doesn't always happen. I think it's important for people to realize just how strong we can truly be.

A couple months ago I saw a woman in the waiting room - she was painfully thin and had an IV line placed in her arm for easy access. I sat next to her and asked why she came to Mayo. She said that she came to live. Back home, she was told that she had two months left to live. They had taken out so much of her intestines that they couldn't remove anymore. She weighed less than 100 pounds and the medicine wasn't working. For the last few months she had been taking nutrients intravenously because she could no longer eat. Mayo was her last hope, but it had to work - back home she had a daughter that was counting on her and she was going to keep fighting until she was strong enough to be everything that her daughter needed her to be.

Talking to this woman was inspirational. While she was telling me that she didn't know how much longer to live, I saw a fierce desire to not only survive, but to come out stronger. She wanted health not only for her, but for her family. No matter what the cost was for her, she would do whatever it took to make life easier for her daughter.

This last week I sat behind a family. They started talking about his colonoscopy that was happening the next day and how that would affect what happened next. I excused myself for eavesdropping and asked if he was possibly going to be diagnosed with IBD. Turns out - he actually was diagnosed with Colitis 20 years ago without a flare-up until last year. Then things got real bad really quickly and he had his colon removed. He was having chronic pouchitis and they were looking at possibly doing a permanent ostomy. We talked for a bit and I told them about the Great Bowel Movement and then about camp when the wife said her niece has Crohn's disease. They seemed really excited to be able to talk to others about IBD so I'm not sure if it's something they really talk about.

During this talk, his family was the most inspiring. Throughout my eavesdropping the wife and boy seemed to be very supportive of the man. They didn't make the visit into a huge deal, but were letting him lean on them as much as possible. So often, we focus on how difficult the disease can be on the patient and lose sight of how it can affect the family dynamics. Many times, patients' families are the unsung heroes. Them and friends. I don't know what I would do without my friends who sit with me and distract me when I'm having a hard day.

I'll try to share the stories of others more often - I don't always have time to chat with people, but I like to.