Cara Hirsch, Ph.D.
Therapist, author, Qigong instructor
12 articles
May 23, 2018
Every time I sit down to write something new, there is a moment of self-doubt, an uncertainty about if I should write about MS. Again. But then I realize that this is a very serious, puzzling, debilitating illness that about 400,000 people have in the U.S. alone and I feel confident that dialogue is needed. Much more dialogue and more specifically, public dialogue birthed from the patient perspective and the patient experience, unattached to MS societies, to doctors, to pharmaceuticals. It is through our sharing of our insights, stories, successes and failures that we can reach a better understanding of the layers of MS and the ways we can treat it differently. We know our bodies, we have more answers than we think, and creating the right treatment is really up to us. It has taken me 12 years to figure this out, so many unspoken stories and thoughts and conversations over that time, surfacing now, bubbling, one article at a time.
Ten years ago, after being misdiagnosed for 2 years, I went to see a top MS neurologist in New York City. At the time, vertigo and numbness had just resurfaced and it was clear that something pretty big was wrong. After seeing every kind of other specialist, I was referred to this neurologist, with my MRI’s, for an MS rule out. Just to back up for a second, like most of us in our culture, when something is wrong, I assumed I needed to see a traditional doctor. This assumption is the first mistake, the first I should have known because the subtext is ‘I have a problem and a doctor is going to solve it.’ Sometimes this is true, but with MS, it is not. There is not one known cause and no known cure. Some people figure it out and are fixed, eliminating the risk factors, making lifestyle changes, trying the right combination of treatments. Most don’t.
So there I was, in my early 30s, newly married with an infant son and because I have vertigo and partial body numbness, I’m feeling pretty awful on many levels. I physically don’t feel well; I’m scared, sad that I’m not, instead, with my son at a playground. I didn’t want any of this and I especially didn’t want to be walking into a neurologist’s office in downtown Brooklyn, NY, with my husband and our sweet baby. Just to be sure the picture is clear and because I imagine that my diagnosis story is like so many others, I felt sick, I was terrified and at the time, felt no sense of empowerment to ask hard questions and advocate for myself. I was literally at this doctor’s mercy. When we walked into the office, there were several low functioning, disabled patients waiting to be seen. We waited ourselves and watched. After a little while, we were called into his office and he came in with my chart and MRI images. This is what he said: “You definitely have MS and you need to start treatment right away, a decent prognosis depends on it. “ The subtext being that if I don’t, I’m going to end up like those people in the waiting room. Noting my infant son, he then added that if I wanted more children, I should have them pretty soon. And that was it. Other than covering some logistics and basic medication information, that was it. I was prescribed Copaxone; the order had been given and I followed because that was all I knew to do at the time.
I actually didn’t just follow, not immediately. At first, I hesitated. I hesitated because I wasn’t ready to hear all of this, because I wanted more time to enjoy the innocence of youth and new motherhood, because I was breastfeeding and afraid of taking a serious immune suppressing medication. During this period of hesitation, I struggled alone, without a knowledgeable guide, the one my neurologist should have been, helping me navigate this new self-experience. I was haunted by what he had told me, the idea that if I didn’t start medication right away, that I would deteriorate quickly. What he did was terrify me and then set me up for failure; any subsequent decline would be because I didn’t take medication when he told me to. It took me years to realize that in all likelihood, starting or not starting that medication had very little to do with my prognosis.
What that neurologist didn’t do was look at me as an individual. He didn’t ask questions, he didn’t look at my lifestyle, any risk factors that could have put my body in this position. He didn’t address my overall well-being, diet, exercise, mental health. What he did not do was tell me what he surely must have known: MS is a complex, individual specific illness and that each patient presents with a unique story and will therefore need a unique approach to treatment. Although diet and nutrition might not traditionally be an inherent part of the Western approach, both should be. Since neurologists are typically the launching pad for diagnosis, the first person that most MS patients talk to about this illness, it is their responsibility to explore a comprehensive diagnostic picture that includes a range of treatment options, both traditional and holistic. At the very least, patients should understand the mystery of this illness and the possibility that without a known cause or cure, medications may or may not work. They are not definitively the answer to the problem.
After that neurologist, I saw another who was equally as dismissive and impersonal. After she brought a medical student to an appointment without my permission and talked about me in the third person, like the object in an experiment, I too left her. While I continued to see a neurologist and take medication until 6 months ago, I definitely was by and large, my own practitioner, researching, trying many different kinds of approaches and treatments. What these neurologists, every neurologist really, didn’t tell me, I discovered myself. In the end, although it breaks my heart that there were things I could have been told which might have changed the course of this illness for me, the empowerment I have found in self-discovery is invaluable. I am as strong as I am today in part because of all the things my neurologists should have told me but did not.
This article is dedicated to Dr. Aaron Miller at the Corinne Goldsmith Dickenson Center for MS in NYC. Because you did not help me to fully understand the breadth and depth of this illness, I was forced to figure it all out myself. As a result, I have come to understand this illness in ways that otherwise might not have been possible. I learned to become self-reliant, stronger, and am finally the patient first advocate that I was not with you 10 years ago. The challenges back then push me to fight harder now; my experience with you then is fuel for the fire now. This is also dedicated to Dr. Barbara Giesser at UCLA. After learning how important nutrition and diet are in MS, I turned to you, my neurologist at the time, for further support and it was you who laughed and told me, “go ahead and eat pizza and have a beer. Just relax. What difference does it make?” Turns out it makes a pretty big one and I have dedicated my career to making sure that those newly diagnosed with MS grasp the importance of exploring all treatment options and making good personal choices for their health. What you should have told me, Dr. Giesser, and what every neurologist should tell every new patient is: no food tastes as good as walking feels.
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