June 12th was Empathy Day, organized by Empathy Lab, a UK-based group that encourages people to read, share, and do in order to “put empathy into action and make a difference in your community.” In that spirit, today’s One-on-Won blog is a departure from the norm. Rather than Dr. Mary Ann being the interviewer, today she is the interviewee and will be speaking with her daughter Tori Wilmarth.
Family, friends, and loved ones are vital support systems for all of us, but they are particularly critical supporters for those suffering from chronic illnesses (See Blog Post: The Importance of Having A Supportive Family When Living with Chronic Illness By Steve Bedard on The Mighty). Although loved ones and caregivers are around chronic illnesses frequently, we often do not take the time to ask or to listen to truly understand our loved one’s experiences. This has been the case for me (Tori). Over the past two years, I have often been the one of our family members who has been here physically to help my Mom. But if I am being truly honest with myself, I have not genuinely listened to my Mom. I know some of the facts about what she is going through, but I have not tried to imagine what it feels like to be a #chronicwarrior and to run out of spoons (#spoonies) just trying to get ready to go to the doctors. Without listening, I have been an ineffective advocate for my Mom.
“How do you define empathy?” My Mom recently asked me this question. Thinking featured prominently in my response. She rightly pointed out that empathy is not about thinking; it is about feeling. The New Oxford American Dictionary defines empathy as “the ability to understand and share the feelings of another.” Em comes from the Greek word for in; pathos from the Greek word for feeling….in-feeling, empathy.
Coming out of an MBA program focused on developing analytical skillsets, I am used to thinking my way through problems – a business case, new strategy development, financial modeling. This is all highly analytical work. But when it comes to supporting a family member with chronic illnesses, thinking will only get you so far. Thinking leads me to focus on things that need to be done, and although I can do some of them, the to-do list steadily grows just as we chip away at it. Feeling helps me remember that each movement aches for my Mom, that her chronic illnesses sap her of her energy and blanket her in fatigue and pain. Although doing things is helpful, the actions I take are more meaningful when they come from a place of empathy, when they are paired with emotional support and understanding. Patients, just like family members and all of us, want to be listened to and to be heard (See Blog Post: To The Doctor Who Finally Saw Me As More Than A Case File By Taylor Yenko on The Mighty).
I recently had some routine testing done as a part of a pre-employment exam for a new job (I will be starting a hospital administration fellowship in Boston in a few short weeks). During this visit, a very kind nurse practitioner inoculated me for a tuberculosis exam. “There is going to be a pinch and a short burning sensation,” she said, as she pulled out a small needle and vial. “Pinch and burn.” I looked away as she pricked my left arm. It was very minor and routine, but I had felt the pinch and burn, and I had looked away in discomfort. The day before, my mother, Dr. Mary Ann, had spent 5+ hours receiving her monthly IVIG infusion. Her primary nurse had trouble finding a suitable vein because she was dehydrated from coughing and vomiting the night before (this difficulty is not entirely uncommon with chronic illness where you are fighting for hydration and homeostasis throughout the body). There was nothing to be got, no vein easily accessible, so the nurse called in reinforcements. My Mom was pricked at least 5 or 6 times that day before the nurses were able to set up a line for her to receive her treatment intravenously.
My mom spent the day in the Oncology Infusion Center. We were there on #EmpathyDay, so we were tweeting and reading to participate. Ironically, I was not applying the empathy I was tweeting about to my Mom’s situation. If I were the patient with a 5+ hour infusion at a cancer center, I would have been nervous, tired, worried, and lonely. I would have been beyond frustrated that after over a month, breathing was still difficult for me, even at rest, and that none of my doctors had satisfactory answers. Had I been the patient, all of this would have been a very big deal. For Dr. Mary Ann, this was merely a Tuesday. I am amazed by my mother’s strength and optimism, and to be honest, I do not think I would have the abundance of either quality if I were in her position. This One-on-Won is not only a part of #EmpathyDay festivities, but it is an opportunity for me to be a more empathetic and understanding daughter, listener, and caregiver.
What made you want to make the change from DocMAW to PatientMAW?
Dr. Mary Ann: First of all, with Doc to Patient, I have actually been Doc AND patient from the very beginning because at the least, I have had osteoarthritis since the day I started working as a physical therapist (PT). I have always had to deal with osteoarthritis secondary to a motor vehicle accident. I was a freshman at Middlebury College and was hit by a car while I was in a crosswalk on my way back from chemistry lab. The result was chronic osteoarthritis throughout my body and chronic problems with both knees – including 9 surgeries culminiating in a total knee replacement on the right. I am currently waiting for a total knee replacement on the left.
I am at the point where I need to explore options of what is the best way to get my story out there and to share my experiences with other patients, caregivers, advocates, and clinicians. I want my story to be shared in the best way possible because as a patient I have seen a disconnect between patients and caregivers that is not positive for healthcare. By bridging the gap, making more connections, and emphasizing empathy, we can make it a much better landscape.
I worked over 35+ years as a PT with chronic pain and dysfunction myself as a result of osteoarthritis. I worked hard to stay strong and to function well. I did not consider myself having chronic illnesses for most of my career, but in reality I did, as I struggled with osteoarthritis, kidney problems, endometriosis, and more. I worked my ass off to make it appear like I was well. That is what you do with a chronic illness….you work so hard to keep going and appear well. I was constantly making accommodations for how my knee felt or my skier’s thumb (also known as gamekeepers thumb — in my case an injury from ski racing in high school. Skier’s thumb can be a challenge as a PT with a manual specialty. I did not shy away from it, even with my own injuries and pain.
This is what it means to have a chronic illness. I pushed myself so much to manage my pain and appear well. I know that everyone has their issues; it is all a matter of degree. You do not know what they have had to go through to get up in the morning. The more time went on, the more I needed several hours to get myself going.
Why did you choose to transform Back2BackPT into Back2Back Wellness rather than creating something new to share your experiences with chronic illness?
Dr. Mary Ann: The choice of bringing Back2BackPT to Back2BackWellness was a debate, but I am the same person, so it made sense to evolve Back2Back. I wanted people to see what it is like going from working full time, having 4 jobs, being relatively healthy (which for me still meant having chronic illnesses) to becoming a full-time patient and dedicating all of my time to trying to be well.
Back2Back Wellness has allowed me to work on things like Twitter, Instagram, and other social media. It also got me back into photography, which has saved my life emotionally over the past few years. My love of photography and finding beauty in every day was a part of why I moved to the ocean.
When it comes to Back2Back Wellness, I wanted to grow with it, and I wanted other people to see what it is like from both sides. Your healthcare providers are human. They cannot work as robots nor do you want them to. You want them to have empathy and to take care of themselves as well, so they can do their best to help you heal.
With chronic illnesses, there is not a lot of privacy. Things are out in the open for the most part. My approach has been to accept it, advocate for myself, and build off what others before me have done to improve the patient experience. We all stand on the shoulders of others and help to strengthen the community and enhance understanding of chronic illnesses.
Initially, I had no idea how ill I was going to get or how all of this would play out. I was doing consulting with patients and former patients. I wanted to maintain the PT part of it. However, I did not have the stamina or physical ability to maintain my professional PT work. I did not have the ability to be available in the way that I felt was necessary to be a strong, effective practitioner with a caring heart.
I have not stopped my lifelong learning. I have taken on advocacy for health and empathy in general for patients dealing with any chronic illness. It is wellness in general that is most important – PT is a specific part of a person’s well-being. I am excited to be encouraging wholistic wellness, as I work on finding wellness myself.
What have your chronic illnesses helped you to discover about yourself?
Dr. Mary Ann: You do not go into chronic illness expecting to learn more about yourself than you ever thought you would, but surprisingly you actually do. I would challenge anyone who has the fortune or misfortune to have a chronic illness to not learn more about yourself than you ever had before.
It challenges you in ways that you never have been previously, regardless of how difficult your circumstances were or how many aspirations you had for yourself. Having chronic illnesses brings you to depths of challenge, isolation, pain, insecurity, enigma, and all of the above at every given moment in time. Chronic illness can bring a perfect storm into your life. That storm becomes an ongoing reality, and then you must learn to dance in the storm or perish.
At the same time, no one who has not gone through chronic illness can truly understand what you are going through. They will challenge you, whether consciously or subconsciously, for what you are doing or what you are not doing. They will challenge you that you are not working hard enough, that you are not doing the right things, that they have a better solution to your problems.
When you are working the hardest you have ever worked just to exist, it is hard to keep a smile on your face and move forward. Empathy is key – everyone is going through something at some point in their life. You do not know exactly what they are going through. You need to trust them. You need that for lifelong learning. You need to trust them and to listen. That is how we support one another. That is what life is all about.
The other thing I have discovered is that my chronic illnesses have brought me to the lowest of lows – from Harvard to homeless. I went to the low extreme on more than one occasion. I take it one day at a time. I do my sunrise and sunset seeking and take in the beauty to fill my soul, so that I can get through another half day, another hour. If I can do that, I can get through another day.
You can’t worry about 2 weeks from now. You do not know what your health is going to be doing then. You have no choice but to live that way, but people can learn from you. This is the way to live. Your life is made of all these little moments. There is meaning in all the work that went into have the small, special, meaningful moments.
If someone says those moments are not meaningful, I would have to agree to disagree. It is about getting that special gift or getting their favorite ice cream and having it ready because they are exhausted. You want them to be happy for that moment in time. Those are the things that make the difference. No one is asking you to do things; you are doing it out of the goodness of your heart and not expecting anything in return. You are supporting the other person wholeheartedly.
The editorial note is that as we had this conversation my Mom kept falling asleep mid-sentence, trailing off in a blur. She was exhausted and sore. We were having this conversation late in the evening, but daytime brought the same challenges. There is never enough energy for the tasks at hand, but my Mom has to push through the pain and exhaustion. As she said, this is what having a chronic illness is all about.
The evening of this conversation was quite terrible for my Mom. After dozing mid-conversation, she was up all night with a hacking cough that triggered vomiting spells. In her words, she felt like she was going to spew her insides out. She was having immense difficulty breathing and was very nauseous. It was a painful evening for her. As a result, we will be supplementing this One-on-Won with additional posts.
❤️ in Wellness,
Dr. Mary Ann