Today I had one of the best doctor visits I can think of in my six and a half years of living with a traumatic brain injury (TBI), and quite possibly ever. My doctor acknowledged that medical care and the pursuit of health can be, and often is, traumatic for people like me who live with a chronic health condition.
Since the diagnosis and confirmation of pituitary damage related to my brain injury in 2017 (3.5 years after my TBI), my hormones get checked through blood work every three to four months to monitor my levels and adjust medication as needed. I have to take almost all hormones that the anterior pituitary produces since mine can’t effectively communicate to the appropriate glands/organs. Today my doctor and I went over those levels and, as usual, some were not within normal limits. These blood work reviews are like listening to a broken record every quarter, and a constant reminder that my body is damaged but doing the best it can.
We discussed increasing thyroid meds again, but lamented that my constantly low DHEA cannot be helped through supplementation since my body decides to convert it excessive and problematic amounts of testosterone and estrogen instead. Ugh. It feels like I can’t win in this game of hormones. As we discussed test values and possible options, we went back and forth about whether or not to change anything. Ultimately, we decided to keep everything the same for a couple of reasons.
First, my doctor, who has worked with me off and on since 2006/2007, acknowledged that in the years of constantly playing with medications and supplements and other treatments/modalities since my TBI, the experience has probably caused some degree of medical trauma and perpetuates the psychological messaging that I’m not healthy/well/normal. Medical trauma? It was a new term to me, but not a new phenomenon or experience. When I researched medical trauma there is not a lot of content, because its study and recognition are still in their infancy. In an excellent article from SocialWork Today entitled “Medical Trauma” by J. Scott Janssen, MSW, LCSW:
“According to Barbara Ganzel, PhD, MSW, of the Bronfenbrenner Center for Translational Research at Cornell University, ‘Medical traumas are psychological traumas that result from medical diagnosis and/or medical intervention. Threat of serious injury or threat to life due to illness is now encompassed within the DSM definition of psychological trauma. This means that medical patients can be evaluated as having illness-related trauma disorders.”
Another website, teachtrauma.com, defines medical trauma as a:
“set of psychological and physiological responses of patients and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences” and that “[r]esponses to medical trauma may include any of the symptoms of posttraumatic stress disorder (PTSD). Responses may vary in intensity and can become disruptive to functioning.”
Medical trauma is most often referred to in the context of acute, emergency treatment and procedures, but it is not limited to them. We cannot forget about the effects medical treatment can have on people with chronic health challenges.
Janssen continues to write:
“Many factors may affect a person’s vulnerability to medical trauma such as a preexisting mental health diagnosis, perceptions about the quality of care, level of trust in one’s medical team, and factors related to treatment (e.g. the length of a hospital stay and types of medications used). [Michelle Flaum Hall, EdD, LPCC-S, an assistant professor in the department of counseling at Xavier University and coauthor of the forthcoming book Managing the Psychological Impact of Medical Trauma: A Guide for Mental Health and Health Care Professionals] says another important factor is the sensitivity of medical staff. ‘When care is not patient-centered, empathic, and sensitive to patient’s emotional health, patients can suffer as a result. The sensitivity of a professional’s communication plays a central role in how people experience traumatic medical events and how they cope with the decontextualization and disempowerment of being patients.’”
Oh how the latter excerpt resonates with me. Over the years of my treatments and therapies for my TBI and its related challenges, I’ve had several practitioners who have delivered information and “care” without any care, sensitivity, empathy, or evident awareness or concern for my mental/emotional state at the time. I’ve left doctors’ offices (not my current doctor) in tears because of how they delivered information to me: as if what they’re saying has no impact on my life, emotions, thoughts, or outlook. It has felt at times like I’m viewed as a non-feeling, inanimate object that just happens to be sitting in front of them and paying them for it. In my experience it has felt like just because what they’re telling me doesn’t affect them, that it’s not a big deal and “shouldn’t” affect me at all.
Everything but the Kitchen Sink
Second, my doctor said something to the effect of, “We just want to help so we throw everything at it, but sometimes to the point of doing harm.” I fully understand that desire to do everything possible to reduce a client/patient’s suffering as a now medically retired holistic health professional with a 14 year career of helping people get out of chronic pain and dysfunction. Sometimes even we, the patient/client, want to throw everything but the kitchen sink, or maybe even include it (why not?), in our quest to get rid of whatever is ailing us. It can be an obsession, a full-time job in and of itself, and very expensive. I nearly went bankrupt in the early years post-TBI in my quest to make it all “go away.”
I told my doctor that I’m tired of and done trying new treatments, remedies, therapies, etc. for the time being. It’s exhausting. Over the years I’ve done a lot of things to help, which I’ve included in my book. Many have been very helpful and worth my time, energy and money, but as I’ve admitted before, early on I focused too much on trying to make it all go away without working on accepting my reality. There has to be a give and take. Give effort, dedication, and time to healing, therapies, and adapting. Then let go and work on accepting and loving who you are right now, knowing that things might not change now or ever, but trust that you are and will be okay even if they don’t change. It’s a practice, and one that cycles like a wheel. Understand you may be on any place on that wheel at any given time, and may stay in any one place for hours, days, months, or years. Believe me, I haven’t mastered this practice, but practice it nonetheless. Last week I felt incredibly depressed and frustrated with where I am on my TBI journey, and that is okay. This week I’m more in the place of acceptance and holding space that things could change (but not on any agenda). I trust that I am and will be okay. How? Well, I’ve gotten this far. My faith in God/Spirit/Universe and belief that I’m here for a reason continue to fuel me. Can you trust that, ultimately, you are and will be okay?
Permission to Be – and Be Seen as Human
As my doctor and I continued to discuss supplementation recommendations that my help some of my challenges, I admitted that sometimes I don’t want to take my supplements and medications because they’re a constant reminder that there is something “wrong” with me. As a nutritional consultant as part of my professional life, it’s kind of embarrassing to say that I don’t always want to take the things I promote. What a hypocrite! Actually, I’m human. Living with a chronic health challenge that may or may not ever go away, having to take 20 total medications and supplements every day just to stay as healthy as possible feels like a constant, never-ending reminder and burden. My doctor sympathized and told me if I don’t feel like taking them, take a week off (not my meds, mind you: those are non-negotiable in my book) and give myself a break if I need it. Honestly, I was blown away. In the past, other doctors have drilled how important it is to always take the products. Likely they have done this without any awareness as to how even taking daily meds and supplements can affect the psyche of someone living with a chronic condition. Don’t get me wrong: I’m so incredibly grateful I have access to these products. There are many who don’t because of the particularly racist healthcare, economic, and education inequities in our culture (but that is another soap box). But they can still feel like a chore.
To have a doctor give me permission to take a break from my supplements when I want is a freedom I’ve never experienced before in healthcare. It may seem silly, or even a “you could have just done that on your own” kind of moment, but as someone who generally follows the recommendations of my healthcare team, it was liberating and heart-warming to be validated, and truly seen and treated as human. To be treated as human, with all the emotions and experiences that come with it, is how every patient and client needs to be treated. Some practitioners forget it. Some relearn it. Some never forget it. We must also remember that doctors and other healthcare practitioners are human, too. They can mess up. Even the most well-intended can cause harm by trying to help too much.
Living with a traumatic brain injury or any chronic health condition brings its own set of challenges, including getting good medical treatment. Medical treatment can cause emotional/psychological trauma. Remember that you are ultimately in charge of your healthcare. You have agency over your body, and what you do or do not do with, have done to, or put into it is your choice. You can say that you’re fed up with something. You can say you want a break. You can have a discussion about it so that you are empowered and informed about whether or not a break from a medication, treatment/modality, or supplement is right for you at any given time. Being heard is the greatest value here, even if you cannot or chose to not to take a break from some aspect of treatment. And if you’re traumatized, not heard, and not treated with compassion, kindness, and respect, then it’s time to work with someone else. You’re worth it.