My topic this month will refer to an experience with medication side effects that is quite personal; but my aim is not confessional: I doubt that my story recounts an uncommon interaction with the medical profession. My hope is that reporting my experience will have relevance for anyone who is struggling with a serious ailment or who has patients who are, that is, many of us. Over the last month or so, I have been put on two new medications that can cause multiple and difficult side effects. It’s a little bizarre that this treatment for cancer causes risks for new kinds of (skin) cancers. Of course, the drug companies provide detailed warnings about the multiple dangers. There is a bit of pretend that is perpetrated, as it dawns on you that the warnings are not only difficult to read but written primarily to provide legal protection for the manufacturer. There’s not much evidence of demonstrating concern or a wish to be helpful to the patient. I wonder if my reaction is idiosyncratic: steadying myself to be ready to start a new medication trial, only to freak out after reading the elaborate, formal and frightening language on the label.
So, I was cruising along, not unduly affected by side effects, until I hit a wall—experiencing chills, temperature and all-around aches and pains. Luckily, this occurred during my academic spring break, so I have had some time to stabilize myself (it is an ongoing challenge, but I do feel better now). My oncology team wanted me to check in and report any occurrence of symptoms, which I did through the on-line portal. I would like to emphasize that my oncology team is amazing in responding quickly and confidently. My oncologist himself is consulted, and a nurse or nurse practitioner reports their recommendation. I have never spoken to my oncologist over the phone, and it does not seem as if he uses the on-line platform; but he is a smart and caring person, who never rushes me in a face-to-face meetings.
Here's the thing: my oncology team responds expeditiously, but in a uniform way: to prescribe new medication to help with side effects. Occasionally, they will acknowledge that they have nothing that is very effective, like for night sweats, for example. I am grateful to have medication options, although it is daunting to have the quantity of medications pile up into double digits. I hesitated but ended up adding a new medication that has helped significantly with the side effects. While I appreciate the alacrity of the response (it feels like someone is home), I was conscious that in reporting the side effects, I was looking for a more substantive response, an engagement in a dialogue about managing the side effects. I am curious about observing my own reaction to the side effects closely--- might it be possible to shift attention and become less bothered? Could I come to tolerate them as mildly unpleasant but not life-interrupting? Could I overcome them by turning my focus to other things I deeply care about?
My expectations of the medical profession, I know, are not so realistic, given the many competing demands doctors are facing. Oncology teams, in particular, are under stress, which understandably produces the need for some emotional distancing. I want to make two points about this. First, I would still stand my ground that the automatic prescription response may not be the optimal one, even if necessary, and that if you are treating the whole person, you might need to make more time to engage patients about their relation to pain and suffering. Second, no one reading this will find it easy to imagine the medical profession en masse shifting in the direction of embracing the idea of reserving time just to listen more closely to patients.
I suspect that the issue of handling side effects must be coming up often in psychotherapies of every kind. Mental health professionals ought to be prepared to step in and to be cognizant of patients’ needs to discuss their medical treatment, especially concerning the effects of medication. We cannot simply recommend speaking to your doctor. Body-oriented therapies and therapies drawing from contemplative traditions are well-aware of creating space for patients beyond traditional medical treatment. The psychosomatic tradition, which has faded in the United States (partly for good reasons), could be resuscitated to help us fathom how the mental realm has an impact on any and all physical ailments. The challenge is to conceptualize this in a non-reductive way that does not alienate patients from feeling that their suffering is not being taken seriously.
The term side effect itself should not be taken for granted. As I have pointed out, the ostentatious outlining of a myriad of side effects on the packaging of medication exists as a way for corporate capitalism to protect itself. Drug companies spend billions of dollars a year advertising their products, which we have come to take for granted. How can be complacent about ads on the subway or on TV, where the risk of death is blatantly mentioned as a possible side effect? If there is reason to hesitate trusting the official language about side effects, how might we prefer to think about them? Do you they even belong inherently to the medication itself? What about rare side effects, which would be hard to predict?
I distinctly remember when SSRIs first were becoming widely used in hospitals, and repeatedly hearing about sexual problems that, at first, were received quizzically, and then minimized as side effects. I recall a patient poignantly talking about how, despite a fair amount of conflict in his marriage, that sex was the one way that he and his wife connected. Frustrated, he decried viewing his difficulty sustaining erections with an SSRI as a side effect. I found it hard to disagree, although a medication change did help the problem.
The point is, I suppose that one person’s main effect can be another’s side effects. What matters the most is that patients’ voice are heard, as this can be the basis for experimenting with understanding how they contend with side effects. It is crucial that the patient’s agency is recognized. No doubt, it is a relief for many patients when the report of a side effect results in the immediate issuing of new medication to treat it. When side effects are noxious, relief is critical, and medical doctors have strong medicines to help patients to cope with pain.
We need to elevate our roles as psychotherapists as translators as well as listeners, who, ideally, can communicate with medical staff, or if not, at least tune into patients to discern what kind of help they are seeking. So far, I have been addressing one particular kind of case where there has been a diagnosis, and there is recognition that the side effects of medication might be hard to tolerate. But I would guess that is especially common for patients who might not yet have a diagnosis or for whom the diagnosis has proven to be illusive. Meghan O’Rourke wrote a brilliant book about her search for a diagnosis for an auto-immune disease and how hard it was to get doctors to take her seriously and work together (her book was discussed in more detail in a previous newsletter: https://elliot4cc.substack.com/p/mentalizing-health-410).[i]
O’Rourke is firm in arguing that medical doctors have a responsibility to treat the whole person. O’Rourke cites a conversation with Susan Block, the pioneer of palliative medicine, who affirms that chronically ill patients should expect “an emotionally supportive relationship with their doctors,” adding that “If we can’t do that, we really are practicing only half of what medicine is and can be” (p. 71). O’Rourke is also adamant that medical doctors need to be more comfortable with the limits of their understanding; not rejecting what eludes their knowledge. As I reflect on O’Rourke’s experience, I was struck by that it is unclear whether she sought out mental health professionals at the same time, even though at one juncture, she refers without elaboration to having had excellent therapists. O’Rourke might have found a measure of consolation in therapy, given the ongoing frustration she faced with the medical profession.
I want to acknowledge one final concern about side effects. On the one hand, it is obviously necessary for drug manufacturers to be responsible in compiling data, based upon trials concerning the range and depth of side effects associated with any medication. Furthermore, it is necessary for this information to be readily available. On the other hand, an implication of my reflections is that there is a subjective component of side effects that cannot be easy to assess quantitatively. I would not say that it is impossible; however, measurement might not be what is most important. Patients need the opportunity to discuss their side effects, and they might not know exactly how they feel until they have the opportunity of processing it with a qualified professional. I have argued that mental health professionals might play a role in listening to patients. Given that a mental health professional might not have actual knowledge about a medication, their role would be to help the patient clarify their feelings in order to better communicate with their doctors. A good medical doctor, however pressed for time, cannot refuse to listen to patients who are articulating their reactions to medication prescribed by him/her/them.
In dwelling on patients’ need to address their side effects, it occurs me that patients’ motivation to do this is part of their effort to make sense of having the disorder or disease. With cancer, there are numerous insightful and amusing accounts that I have read and treasured. Here’s a list of some of my favorites (in alphabetical order): Teva Harrison’s In-Between Days: A Memoir about Living with Cancer (Canada: Anansi, 2017); Suleika Jaouad”s Between Two Kingdoms: A Memoir of a Life Interrupted (New York: Random House, 2021);Audre Lorde’s The Cancer Journals (New York and London: Penguin, 2020/1980); Tallu Schuyler Quinn’s What We Wish Were True: Reflections on Nurturing Life and Facing Death (New York: Convergent Books/Random House, 2022); Will Schwalbe The End of Your Life Bookclub (New York: Knopf, 2012); and Nancy Stordahl’s Cancer is Not a Gift and It Did Not Make Me a Better Person: A Memoir about Cancer as I know It (South Carolina: CreateSpace Independent Publishing Platform, 2015).
These books provide genuine consolation and confirmation that what we might assume are individual experiences are actually experienced by many people. My complaints about the medical profession are not intended to question the integrity of their work, and I feel grateful to my oncology team for helping me through the latest crisis. My plea to mental health professionals is offered with the awareness that many of us already might be attending to our patients’ needs to make sense of their illnesses. If there is a single message to be drawn, it might be that the psychosomatic tradition deserves to be reconsidered and reformulated for the contemporary world of mental health.
[i] M. O’Rourke (2022). The Invisible Kingdom: Reimagining Chronic Illness. New York: Riverhead.