By Gayle Lewis, Ph.D.
The issue that makes multiple sclerosis intolerable for both my patients and me is its very high level of unpredictability
I’m a pretty private person--in my practice and elsewhere. While I care about boundaries, I’ve become less stringent about my privacy over the years, both personally and professionally. I work diligently to keep the analytic space as “clean” as possible but realize that patients can read a lot about me from my décor, my dress, even the bags under my eyes. But I do my best not to taint the space with personal problems so that patients have freedom to say what they need to say and do what they need to do in treatment.
But I’ve decided to share something very personal. It’s an issue that overlaps with many of my patients, not always in the same way, but for many in a significant way. In turn, I wanted to talk about what that’s like: dealing with something myself at the same time that my patient is dealing with it. This happens with all clinicians at times but for me it is an ongoing matter that poses great emotional and mental challenges, moments of identification and understanding, and a general feeling of unfairness that THIS is the thing that overlaps.
I have Multiple Sclerosis. Ironically, I was working as a psychologist (still am) at an MS Care Center in New York when I was diagnosed about five years ago. I have Relapsing Remitting Multiple Sclerosis. That’s considered the least problematic of the types of MS and my doctors have felt optimistic about what they think my course will be, based on how I’ve expressed symptoms and recovered from them. BUT, as I’ve found in my work, because this disease is unpredictable and because progression can happen at any time, it is not far-fetched to feel at times like a ticking time bomb.
Except for my diagnosis I am healthy, very active (have completed 3 Olympic triathlons, finish regularly in the top 10% of women in NYRR races I enter, top 2-3% of my age group, just trained for my first marathon), strong, I take care of myself and my MS is mostly silent.
When patients who are more progressed enter my office, I sometimes feel scared that I will face the same difficulties they now face; on days like that, I find it harder to do my work with them. At times, I find it hard when I feel really good and strong, and hear patients talk about the loss they feel as their health declines. This is particularly challenging when they miss activities I continue to enjoy.
Many of my MS patients either know (because I have told them) or have guessed that I also have the disease. All of their reactions have surprised me. For example, every patient with MS who knows I have MS has been “happy.” I’ve actually heard the word “happy,” which has felt odd. Each patient respectively clarified that he/she was not happy I have MS per se, but happy that I “get it,” and felt more connected to me, more understood by me, closer to me. I haven’t disclosed my MS to all of my patients. I’ve only told patients when it seemed appropriate and useful for our work.
There. It’s done. I’ve survived this part. But revealing this now opens a Pandora’s box of issues with which my patients and I concurrently struggle.
For example, for some people with MS, those with a progressive form of the disease, there is awareness at the outset that things will get worse. For others, with a relapsing-remitting course, things could get worse. On the other hand, the MS symptoms could either go away entirely or abate to a point where it is hovering and noticeable, but not necessarily in a flagrantly interfering kind of way. The number one issue that makes MS intolerable for both my patients and me is its very high level of unpredictability.
Then there is the question of will the medication work? (And what does “work” really mean?) There are disease-modifying medications that, when taken as prescribed, have some chance of preventing disease progression. The injectables have a 37% effectiveness rating. Tysabri and some of the newer oral medications, compared to the injectables, have a greater level of effectiveness but none of these are cures. Even if a patient is on these medications, the MS can progress.
It is truly a crapshoot if any of these medications will help. It's better than doing nothing, most neurologists would agree. And taking a supported, approved medication is a proactive, an act of self-care. But this doesn’t always inspire confidence when disease progression is still possible.
Then there’s the assumed power of worrying. Those with MS, just as with the general population, sometimes find that worrying about an event in the future which may or may not happen, feels like a way to control the emotional reaction to what might come, and even to control the event itself. Many of us with MS spend a great deal of time and energy focusing on and imagining the worst MS course as a way to prepare for, control, and even avoid "the worst" from happening. As if worrying bears such power for any of us!
With all these things in mind, in my work with patients and for myself, as well, I try to emphasize the importance of focusing on the here and now. By concentrating so much on what could be, we are missing out on what is happening in the moment! By making negative predictions about the future, we both erroneously presume that the worry will somehow give us control over what's to come and, at the same time, end up wasting a lot of energy fearing something that might not even happen.
Life carries much uncertainty. The best we can do is to find ways to empower ourselves with what is known, make constructive decisions about those things and enjoy living in the present.
Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU's Langone Medical Center, and Staff Psychologist at Juilliard's Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the Eating Disorders, Compulsions and Addictions Service (EDCAS) program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com.