I have lived with a chronic illness diagnosis for almost 10 years, sought complex care in two states from five different well-known academic medical centers. I have experienced too many specialty consults to count that encompassed the good, the bad, and the ugly of interacting with doctors. I’ve also had moments of profound compassion and expert care.
How I communicate with my care team has evolved over time. When I was first diagnosed I was dumbfounded. I didn’t know what I didn’t know and looking back, what I didn’t know, was everything. There isn’t an introductory course for complex care, medical terminology, tests, medications, and treatments or what to even expect from a doctor. I had so many questions as to the etiquette and expectation of me as a patient as well as what I was allowed to expect of them as my doctor. Do they tell me what to do and I must obey? Where can and should I get more information? How do I advocate for myself? How do you know when it’s time to leave because the relationship just feels off or wrong? There’s a steep chronic illness learning curve. I talk about these things in a previous post about finding the right doctor.
I feel that as I learned the language of MS, of chronic illness, I changed how I advocated for myself. To be loud. To be demanding. And yes, to be respectful and kind as well. I don’t want to give the impression I am a screaming banshee but on more than one visit there have been tears and there have been emotional demands for time and attention. Eventually, I discovered that while they have studied my disease clinically, I live it. Every damn day. I am a subject matter expert on MS and the subject matter expert on my MS. I am the CEO of my health. Doctors are invited to be a consultant on my board of directors. That relationship and perspective is transformative in your healthcare experience and trajectory.
Frankly, I don’t care if I’m labeled difficult, annoying, tedious, troublesome or educated, informed, and curious. The adjective doesn’t matter because I know I deserve their time, attention, and focus. Every patient does. But it’s not always a battle, there are individuals who have a calling to medicine and a gift for human interaction. These wonderful humans exist and they effortlessly translate complex medical jargon to everyday language all while exuding emotional stability and comfort.
I have three specific encounters with three extraordinary doctors that shaped who I am as a patient as well as what I know I need from the doctor/patient relationship. Because now, I know it is possible. I’m not asking too much. What I want is not unreasonable. If I stick with the dating metaphor as I did in my first post, you have to kiss a lot of frogs to find your prince. In my healthcare journey, there are three princes who stand out.
Julian is not a neurologist but cared for me in a surgical capacity. He wasn’t even my doctor but happened to be on call when I suffered a devastating miscarriage several years ago. There was mismanagement of my case at the emergency department and I was wrongly sent home in pain with extensive bleeding. Several days later I was still in agony and required emergency surgery. Julian advocated for me following my on-call page for help. He acknowledged that what happened shouldn’t have, but he was going to take care of me going forward.
I vividly recall lying on the operating room table, with tears streaming down my face, my physical pain dulled by opioids but my emotional pain barely manageable. The entire surgical team stood still as Julian came up to me, placed his hands on either side of my face and said, “I am going to take care of you, Carolyn. I’ve got you.”
I remember thinking of him — still to this day — as my white knight. I realized the power a doctor has to take pain away but also to provide comfort, safety, and assurance. You need to believe in your doctor. You need to trust them. You need to be on the same side. He took the time to connect to me in an intimate and vulnerable way. He committed to me. He earned my trust. I never wanted anything less from any doctor.
To adequately share this story I have to expose what a complete asshole I was the first time I met Justin. I was fed up with being passed around from doctor to nurse to fellow to resident. I was sick of telling my story over and over again for their learning opportunity. I was meeting Justin for the first time during his neurological fellowship, giving him zero respect and a whole lot of attitude. (I said there’s been a learning curve, didn’t I?)
I quickly realized Justin was not like other doctors. He has a piercing gaze and an open demeanor. His presence screams “you can trust me.” He never tried to multitask writing notes in my electronic medical record and listening to me. He mastered the art of the pause. He would actively listen to what I said, concerns I mentioned, and pause to ponder a response. He asked clarifying questions and would dig deeper on flippant comments I made about symptoms. He tried to understand where I was at and he learned what was important to me. In all my meetings with Justin, I never felt like I was one of many. I always felt like I was his only patient and he shared his entire medical expertise and knowledge with me.
During a routine consult, I broke down in tears as I explained a plethora of symptoms from bladder urgency to balance issues, emotional volatility to spasticity. Justin said, “You are an incredibly strong woman and you are experiencing a lot. Even though you’re strong, you don’t have to do this on your own. Why do you think you have to?” This opened the door to talk about medications and other support.
Up until this point I was extremely resistant to pharmaceutical help for symptom management. I thought (wrongly!) that I was stronger if I did it on my own. Justin’s perfect turn of phrase acknowledged my strength and challenged me on my preconceived notions. Also, in a non-threatening way, he opened up a dialogue. He did not sound condescending; nothing was a requirement or an order. He put help and relief in my corner; the decision was mine for the taking. He never belittled my feelings but met me exactly where I was at and brought suggestions and options to me so I could make an informed choice.
He left Cleveland Clinic following his fellowship and I was devastated. After my petulant temper tantrum in our first meeting, I had finally found a partner, someone I trusted who appeared to speak fluent Carolyn. Months later I was getting my Ocrevus infusion and every single patient in the infusion room was talking about him and what a loss it was that he left. Clearly I was not the only patient who fell in love with his clear language, forthrightness and kind bedside manner.
I have apologized for my initial greeting and he graciously accepted but I still look back at that day and shake my head in shame. I learned humility and openness from that encounter. I was the one solely in the wrong and he was nothing but gracious. His care and professional standards never waivered in the face of my attitude and rudeness.
It’s easy to get beaten down and think all doctors are the same and anyone with a chronic illness has encountered a bad doctor, maybe even lost hope that a doctor will care. Justin changed how I enter new relationships with my care team forever moving forward.
Dan brought bone marrow transplant into my life. He’s been my doctor for several years and we speak quite candidly with one another. Although I saw him recently, I forgot to ask him how long he had been thinking of me for HSCT. Dan does amazing research every day that affects the lives of people with MS. He’s improving diagnosis criteria and timelines, developing clinical treatments, and enhancing patient care paths. He’s making a tangible difference in the world.
But in 2021, I was frustrated and hopeless. I was waiting to get sicker. I felt I had exhausted the lengths of modern medicine. Clearly, based on the entire premise of this blog and my experience with HSCT, I was wrong. Dan said two things to me that I remember to this day. First, that I am one of the patients that is always on his mind. When he reads research, when he’s designing research, he thinks about my case, my clinical anomalies. He thinks about me. The second thing he said, that he asked of me, was to not give up hope. He asked me to stay with him, to remain a team. He said, “give us a chance.”
I don’t think I’ll ever know all the things Dan has done for me behind the scenes. But I know my case was presented to a neurological committee as a first step to even think about HSCT. I know that he explained the treatment back in February in clear language and shared the experimental nature of the procedure. He never shied away from how hard it would be or the risk I was taking. He never pressured me but presented it as an option to consider. He has continually listened to my feedback on how to improve the program. He provided access and assistance when I needed him. He fought for me. He advocated for me but more than anything he gave me back hope.
The last year of my life has been about finding hope again. I’ve learned the limits of my body, my heart, my mind and I tested them. I’m reminded of all the reasons to be grateful, especially for all the movement I still have. The past year, courtesy of Dan (and about 10,000 other people at Cleveland Clinic), I was given a second chance at a working and functional immune system.
Thank you to my doctors for teaching me patience, showing me empathy and developing science that gives people a second chance at health; and life. I know I am not always the easiest patient, but I hope I’m the most grateful.