This is a guest contributor post by Cathyrn Molloy, Associate Professor at James Madison University’s School of Writing, Rhetoric and Technical Communication and an Assistant editor for the Rhetoric of Health and Medicine journal.
Assessing Body/Mind Connection: Knowing When & How to Push Back Against Care Providers’ Assertions that your Symptoms are ‘All in Your Head’
I’m going to share some very early results of research I’ve been doing on patients’ strategies for establishing their credibility with doctors and other care providers when their symptoms are wrongly assumed to be “in their heads,” including insights from interview data from persons with lupus.
I’m fortunate enough to have been invited to contribute this guest post on how lupus patients or those who suspect they might have lupus can maximize their credibility in health and medical consultations—particularly when their symptoms are treated with suspicion.
Unfortunately, lupus sufferers have a high likelihood of being told that their physical symptoms originate “in their heads.”
In fact, a recent Lupus Foundation of America Study revealed that over half of persons with lupus have been told that they have no physical disease and that their symptoms are psychological.
These results are quite alarming as, though we know no perfect treatment for the myriad symptoms of lupus exist, receiving inappropriate psychiatric treatment in place of care plans that address this autoimmune disease can leave patients more ill than when they sought care in the first place.
So, Readers: have you ever been told that your physical symptoms are “in your head”?
Ever been hastily prescribed antidepressants?
Ever been advised to engage in more self-care to address physical symptoms—more yoga, more meditation, more vegetables, more sleep?
Ever become totally dejected when all your efforts at eating better, exercising more, and breathing slower do little or nothing to change the physical symptoms you’re experiencing?
First, it’s worth noting that you are certainly not alone. Many of us go to care providers with mysterious symptoms and are told that these sensations are physical manifestations of psychological distress.
To be fair, care providers likely believe that our minds are making our bodies feel sick; they give us advice based on this assumption and not out of a desire to do harm.
They very much have an impulse to help. As well, bodies and minds, of course, are inextricably linked. Sometimes physical symptoms do have psychological causes, but probably not as often as they are diagnosed as such.
So, when we take this information to heart and do all the things one is meant to do to improve mental health in the hopes of alleviating physical symptoms and see no change in those physical symptoms, it can be incredibly daunting, to say the least.
Here’s something else that is all too common, according to the literature in sociology: your symptoms are treated with suspicion in care settings, but your loved ones, acquaintances or friends with more social capital have their symptoms treated with compassion and understanding and with a serious series of diagnostic tests to get to the bottom of what is going on.
Unfortunately, research supports the idea that certain personal attributes make it more likely that you’ll be diagnosed with physical symptoms as “in your head,” including being a woman, a member of the LGBTQ community, a person of color, and/or a low-income individual.
Of course, having intersecting marks of difference or having a psychiatric diagnosis exacerbate the possibility of being misdiagnosed with physical symptoms with psychological causes.
Psychiatrist Allen Francis has written compellingly on the problematic over-diagnosis of mysterious physical symptoms as originating in the patient’s head. His position is a balanced one since he is not suggesting that no physical symptoms have psychological precursors, nor is he suggesting that physical suffering cannot lead to mental distress.
Instead, he cautions us all to think more critically about the stigmatizing effects of such diagnoses and on the inappropriateness of under-investigating physical symptoms based on a hasty correlation between physical and mental health.
In cases where physical symptoms have no known organic causes, perhaps prescriptions to engage in self-care of various flavors are helpful or even vital.
However, when physical symptoms have difficult-to-diagnose physical illnesses at their root, taking unnecessary psychiatric medications or giving into the imperative to just try harder to make yourself feel better can, ironically, leave you feeling much worse than you did prior to your initial doctor’s visit. You might very well be left with feeling like, aside from your head making your body sick, you’re just no good at “self-care.”
So, in the case of my 65 interviewees, I’ve found a few notable trends that might help those who aren’t always taken seriously in care settings. These are perhaps as useful as they are:
1. Be Your Own Advocate.
If you are used to being quiet and acquiescent, adapt to a more forceful disposition. I like to think about this insight as related to Dr. Kristin Neff’s important work on self-compassion. Treat yourself the way you’d treat a very good friend or loved one going through a difficult symptoms journey. If your loved one’s symptoms were met with suspicion, what would you do or say to help their care provider to dig deeper into the causes? Do and say those things on your own behalf.
2. Do your own research, and do it in high-quality places, such as in scholarly journals that you print out and bring with you to your appointments.
Doctors, of course, do not want to hear about your WebMD search, but they might be interested in findings you gather from recent, rigorous research. Don’t know where to start? Visit your local library and ask for help. Find strong advocacy organizations that share bibliographies of cutting-edge findings. Arm yourself with this information.
3. Keep Symptoms Journals with Detailed Information on Dates, Times and Duration of Symptoms Alongside Proactive Steps You’re Taking to Take Good Care of Yourself.
I know this sounds exhausting, but having this information ready to share helps you to show patterns and to establish the fact that, for example, your efforts at self-care haven’t changed symptoms (if that is true for you).
4. Emphasize Day-To-Day Impairment Over Symptoms to Build Empathy and Understanding.
Perhaps your care provider will be better able to appreciate what you’re going through not by hearing about where things feel off, but by hearing very detailed accounts of what you are no longer able to do as a result of your symptoms. Share what your life used to be and what it is now.
5. Allow for The Possibility that The Doctor Really Does Know Best While, at The Same Time, Insisting on Your Own Body Knowledge.
Care providers, of course, do not respond well to the insinuation that their years in school and/or in practice do not give them a certain level of expertise that is to be appreciated and even respected. If we approach care providers with our own ideas but also clearly communicate respect for theirs, they are more likely to listen to what we have to say and to consider our viewpoints.
6. If All Else Fails, Assign a Credibility Proxy.
This is a really upsetting finding, readers, but I’ve talked with many people who suffered for years—sometimes a decade or more—with physical symptoms of disease that were misattributed to psychiatric causes. Several participants indicated that their care providers only took them seriously when they began to bring a highly credible friend or loved one along to vouch for their symptoms. Many times, these accounts are from women who resorted to bringing their male partners to medical appointments to help to convince the care provider that the symptoms have physical causes. Others brought parents, sibling or close friends.
Readers, these are very early results and are imperfect. I hope to reach out to the wonderful Janeen to update this post once I am finished transcribing interviews and analyzing data.
That said, I’m hoping they give us all a sense of what kinds of moves might make it more likely that our symptoms will be treated always as potential signs of serious disease worth further inquiry in care settings.
These findings clearly show why sites like Lupus Health Shop and work like Janeen’s are so very important. Again, I am so happy to contribute in this small way to the work she is doing.
Thanks very much for reading!
Cathryn Molloy is Associate Professor in James Madison University’s School of Writing, Rhetoric and Technical Communication where she teaches a variety of undergraduate and graduate courses. She is a researcher in the rhetoric of health and medicine and serves as an assistant editor for the Rhetoric of Health and Medicine journal.