Lisa Doggett is a family doctor living in Austin, Texas. Her story is one of triumph and hope in the face of a frightening diagnosis. Nicholas Alexander caught up with Dr. Doggett recently, and she shared her experience with us. Get ready to be inspired.
Nicholas Alexander: Tell us about yourself, including when you were diagnosed with MS and how that happened.
Lisa Doggett: I’m a family 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.
Alexander: You recently wrote a book called, Up the Down Escalator. What is this book about?
Doggett: 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 major difficulties – health challenges and also a lack of resources. I had a patient with bats in her apartment. I had a patient who couldn’t pay $4 to refill his anxiety medicine. I never expected to get sick myself, esp. with a condition like MS, a chronic neurologic disease that is a leading cause of disability in young adults. 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.
Alexander: Why did you decide to write it?
Doggett: My diagnosis was a huge shock. I had two kids under five and a really challenging job. I was a health nut, and I never expected to get sick. 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. Of course, I also wrote it to help others dealing with a tough medical diagnosis and those who care for them. I hope they can find some validation and some ideas about how to think about their experience that may be helpful. Finally, I wrote this 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.
Alexander: 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?
Doggett: I’m obviously 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.
Alexander: What was your darkest moment during your initial struggles with MS symptoms?
Doggett: 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 was 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 completely incapacitated for several 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. It just really amped up the level of concern I had for my own health and well-being.
Alexander: How has MS affected your relationship with your patients?
Doggett: 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 very 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 suddenly stuck with a chronic illness that will forever change your life. After my diagnosis, I think I was a little more gentle and compassionate when I spoke to patients about difficult health news. I don’t share my own story with them, but with many of them, I feel a deeper connection.
Alexander: How has MS impacted your family and your daily life?
Doggett: MS has impacted my family – more so at the beginning, but even now, it touches all of us. It has been a strain on my marriage, and at the same time, it has brought us closer. It’s similar with my kids. My dizziness in the early years was very difficult to manage, and it made me impatient and irritable. I think with a lot of other friends and family, it’s brought us closer. We’ve learned to be grateful for the time and experiences we have together. We don’t take each other for granted.
I remember soon after I was diagnosed, I met another MS warrior – another mom with young kids who had MS. She told me that after she would go days without thinking about MS. I couldn’t believe that was possible because, at first, it was so all-consuming, but now it’s true. I don’t think about MS every day. I sometimes go weeks without symptoms, and I feel good and healthy most of the time. I’m super lucky that MS medications have improved so much in the last 20 years, and especially in the last six or seven. MS can still be a devastating illness in some cases, but for many of us, it can be well-controlled with medication.
Alexander: What are the key lessons learned since you first got sick with MS? What has surprised you?
Doggett: There are lots of important lessons I’ve learned since my diagnosis!
Here are 3 of them:
- 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.
- Prioritize self-care. One chronic disease is more than enough, and I want to do everything I can to prevent another, so I make sure to exercise every day, eat a healthy diet, and protect my sleep.
- 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.
Alexander: In what ways has your experience as a doctor with MS been different from nonphysicians?
Doggett: Being a doctor has given me some unique advantages, since I have connections with other doctors. I also have enough medical training to know what questions to ask and where to go for reliable information. I was diagnosed nine days after my main symptom – dizziness – started, and I think that’s because I was able to contact physician colleagues to be seen quickly and discuss the tests I needed. That said, I want everyone to be able to get that high level of care. When I was diagnosed, I was leading a clinic where a lot of my patients didn’t have insurance. I was constantly struggling to get them in to see specialists and to get medical tests that they couldn’t afford. The contrast of my experience to theirs was so stark and really brought home the inequities in our healthcare system. Everyone should have timely access to care. Unfortunately, the reality is very different.
Alexander: You talk about “silver linings” – what are some of the silver linings from having MS?
Doggett: I think MS has shifted my perspective so that I am more focused on the present moment, since I have an extra dose of uncertainty and don’t know what the future holds. It took me a while, but I decided that MS was not an excuse to give up my dreams, but rather to seize them – that includes fitness goals (triathlon), trips I’ve always wanted to take, writing a column for a national news organization (Public Health Watch). It also means prioritizing what’s important – my parents and I bike together at Lady Bird Lake or Southern Walnut Creek every weekend when we’re all in town. Overall, MS has taught me to do more and do it now. I think – or at least I hope – that MS has made me wiser, more flexible, and more grateful for the many gifts of my imperfect life.
Alexander: What advice would you give someone who is facing a new diagnosis of MS or another chronic condition?
Doggett: I think every situation is different, and of course it depends on the condition and your support circle. 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 actually get better. 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 think that’s pretty normal. I experienced a lot of grief for my former, healthy self. But then you have to move on.
So my advice would be:
1) Stay hopeful and know that things are likely to get better.
2) Make sure you have a doctor you can trust as your partner to help you live your best life.
3) Build a strong support circle of friends, family, neighbors, health care providers.
4) 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.
5) You may have to adjust some plans, but figure out what you want to accomplish – set those goals – and then go for it.
Alexander: You’ve done pretty well with your MS. You’re still able to work and be active. Tell us how you’ve taken care of yourself since your diagnosis.
Diagnosis: I’m so fortunate to have excellent healthcare from my doctors and one of the newer, most effective MS medications available. Sticking with my treatment plan has been very helpful and kept me healthy. But I also prioritize self-care by exercising first thing every morning, eating a healthy diet with lots of fruits and veggies, making sure to get enough sleep, and avoiding dangerous substances like tobacco and excessive alcohol. Mindfulness meditation has been key to controlling my dizziness and helps me feel more grounded. But I’ve also learned you can do everything right and still get sick. I do what I can but luck still plays a bit role. I’ve been lucky.
Alexander: What are some of your greatest achievements since your diagnosis?
Doggett: I’m super proud of finishing and publishing my memoir – it’s been a major effort, and it’s gratifying to have it out in the world, but I’m also proud of a lot of other things:
- Learning to tackle my symptoms and accept my diagnosis and the uncertainty of MS
- Raising two amazing kids who are now strong and caring young women
- Maintaining a supportive marriage
- Training for and completing two marathons
- Finishing a half Ironman triathlon (70.3 miles of swimming, biking and running) in April
- Finishing the MS150 bike ride – 160+ miles from Austin to College Station (it used to be Houston to Austin) four times.
Alexander: Is there anything else you would like to share with us?
Doggett: I just want to emphasize the importance of having and nurturing a support circle – you never know when you might need them. But even if you never get sick, it’s important to have close connections in your life, people you can count on and who count on you. My life is enriched by my friends and family, more than anything. MS really showed me how important those connections are.
For those who want to hear more, check out my book: It’s a story – not a how-to guide or advice column – more like a novel that happens to be true. I hope you like it!
Lisa Doggett, a family physician, was diagnosed with multiple sclerosis in 2009. She is passionate about improving care for vulnerable populations and helping people with MS and other chronic conditions live their best lives. She is the author of Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis.