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Tell us about yourself, including when you were diagnosed with multiple sclerosis and how that happened.
I’m a family and lifestyle medicine doctor, a mom of two girls, and a native Texan. I’m married to a pediatric hospital doctor, and we live in Austin, where I was born and raised. I grew up in a family where public service is a way of life. I am passionate about improving healthcare for vulnerable populations and helping people with chronic conditions live their best lives. My own diagnosis with MS happened in 2009 when I woke up dizzy, didn’t get better and started getting new symptoms. I got an MRI showing probable MS, which was confirmed later with a spinal tap.
Please explain what multiple sclerosis is.
Multiple sclerosis (MS) is a chronic, autoimmune disease of the central nervous system – the brain and spinal cord. It happens when the body’s immune system attacks and damages a substance called myelin. Myelin acts like insulation for our nerves, and when it’s damaged, it’s harder for the brain to communicate with other parts of the body. MS causes a wide range of symptoms including mobility problems, sensory changes, visual disturbance, cognitive dysfunction, pain, and fatigue. It’s known as a leading cause of neurologic disability in young adults. We don’t know why MS happens, but we think it’s a combination of genetics and the environment. Research in the last several years has linked exposure to the Epstein-Barr virus (the virus that causes mono) with MS, though we don’t fully understand the connection.
You recently published a memoir called Up the Down Escalator. What is this book about?
This memoir is about my transformation from doctor to patient while I was directing a clinic for underserved and uninsured patients near downtown Austin. Before my diagnosis, I already was overwhelmed taking care of patients who struggled with both health problems and a lack of resources. Sometimes my patients couldn’t afford their medicines. Some of them didn’t have a support circle at all, even while facing major illnesses. I never expected to get sick myself. This book is about my journey coming to terms with the illness and about the insights I gained on the frontlines of the messy and dysfunctional US healthcare system.
Why did you decide to write it?
My diagnosis was a huge shock. I had two kids under five and a really challenging job. I thought I was doing all the right things to take care of myself. I’m a planner and I’m ambitious, but suddenly I faced a life sentence with a chronic disease. Writing this book was really a self-indulgent exercise – it was a way
for me to process what happened. I’ve always written in a journal – I started writing every day at age 11, and I’ve only missed about 5-6 days since. It was therapeutic for me to tear apart my experience with MS and put the pieces back together.
I also wrote it to help others dealing with a tough medical diagnosis and those who care for them. I hoped they could find some validation and some ideas about how to think about their experience that may be helpful. Finally, I wrote for my patients, many of whom struggled with conditions and circumstances far worse than mine. I wanted to shine a light on the extraordinary health disparities in this country and challenge our leaders and elected officials to prioritize true universal health coverage and health access.
For many people with MS or other health conditions, it can be hard to open up and share their diagnosis with others. How have you navigated telling people that you have MS?
Well, I’m not secretive. I mean, I wrote a memoir! I started telling people almost right away after my diagnosis, and I found it helpful to share my story, to share the burden. I realize not everyone can do that. Diseases like MS still carry a stigma with some people, and it can impact peoples’ careers and friendships. But I was fortunate to get support from friends and coworkers who really stepped up to help. When I’ve changed jobs or met new people, sometimes I’ve had to think a little harder about if, when and how to share that I have MS. I’ve varied my approach, depending on the situation, but in almost every instance, I’ve received a supportive response and been glad I was able to be vulnerable and authentic with sharing this part of myself.
What was your darkest moment during your initial struggles with MS symptoms?
There were two very dark moments. One was just before my diagnosis when I thought I had a brain tumor. I had never personally diagnosed anyone with MS, and that diagnostic possibility just never occurred to me, though now it seems obvious. I couldn’t explain my symptoms, and I really thought a brain tumor was the only thing that made sense. The second awful period was after my spinal tap, which wa done to confirm my diagnosis. I got very sick. Looking back, I don’t even think it was the spinal tap that made me sick, but I was incapacitated for days, and I didn’t know if I would ever recover. Both incidents were particularly difficult because my kids were so little. I didn’t know if I would be able to take care of them.
How has MS affected your relationship with your patients?
I think MS has granted me a new level of empathy and understanding with patients that I didn’t have before I got sick. I know on a personal level what it’s like to have scary symptoms, to undergo a diagnostic work-up wondering what you’ll find, and then to hear that you’re stuck with a life-altering a disease like MS. I now work almost exclusively with other patients with MS as a lifestyle medicine physician. I provide coaching and support to help slow MS progression and to prevent other chronic diseases. It's incredible to be in a position where having MS actually makes me better at my job and better able to relate to my patients.
You mentioned that you studied lifestyle medicine. What is that?
Lifestyle medicine is a fairly new field that seeks to prevent, treat, and reverse chronic conditions by helping people adopt a healthy lifestyle. There are six areas of focus: 1) A whole food, plant-based diet; 2) Physical activity; 3) Adequate, restful sleep; 4) Avoidance of unhealthy substances; 5) Stress management; and 6) Connection with others. I help my patients identify lifestyle challenges and set meaningful, realistic goals to be as healthy are possible, even while living with MS. It’s a dream job, and I’m so excited to be able to share my experience and support others.
What are the key lessons learned since you first got sick with MS? What has surprised you?
I’ve learned so much since my diagnosis! In addition to following a healthy lifestyle, here are two lessons learned:
· Self-advocacy is really important. Whether it is fighting an insurance company over an unfair bill or calling multiple times to get test results from the doctor, it’s critical to stand up for yourself and seek answers to your health questions.
· Know your purpose and always have a goal or a project of some sort. In recent years, I’ve trained for the MS150 bike ride every spring. I’ve developed writing goals and work goals. Having something to work towards gives me a reason to get up in the morning and a sense of accomplishment.
What advice would you give someone who is facing a new diagnosis of MS or another chronic condition?
I think every situation is different, but in a lot of cases, getting the diagnosis – or the process leading up to the diagnosis, when you’re still not sure what’s wrong - is the worst part. I think we are often programmed to think of the worst-case scenario, and yet most of the time things improve. It’s important to give yourself time to feel whatever you’re going to feel and not judge yourself for it. I felt shock, anger, and sadness. I experienced a lot of grief for my former, healthy self. But then you have to move on.
So my advice would be:
Stay hopeful and know that things are likely to get better.
Make sure you have a doctor you can trust as your partner to help you live your best life.
Build a strong support circle of friends, family, neighbors, health care providers.
If you can’t go public with your diagnosis, at least tell someone who can provide support, be a sounding board, and help you process what’s happening and plan for the future.
You may have to adjust some plans, but figure out what you want to accomplish – set those goals – and then go for it.
Learn more at https://www.lisadoggett.com/.