The Benefit of Doubt
"Now I understand doubt as a teacher," reflects Tasha, two years into her travails grappling with uterine fibroids. By generously sharing her story, we learn the power of three questions that can help in matters of medical care:
How certain is the science?
What are we missing?
How does it apply to my unique circumstance?
In June 2022, Tasha experienced severe pelvic pain, accompanied by cramping, incontinence, and the vague, unsettling sensation of a mass in her lower abdomen.
As a recent transplant from Georgia to the front range of Colorado, she did not know the medical system or have trusted advisors who could help her navigate. It took six months to get a definitive diagnosis, when a pelvic ultrasound revealed a non-cancerous fibroid the size of a large grapefruit in her uterus.
The diagnosis brought her relief from the anxiety of not knowing, but also introduced new fears and confusion: What causes this? What is it going to do to me? What should be done? Will I be able to bear a child? How do I cope with the daily symptoms and pain?
Getting answers to these questions felt to Tasha like "traveling through the medical industry." She saw at least five different practitioners, was offered lots of options––in line with published evidence based medical guidelines, heavy on medications and procedures. At one-point, laparoscopic removal of her uterus was planned, but she didn't have it done because of uncertain insurance coverage.
While the medical system offered her these numerous options, it was through her personal exploration and support matrix that she began to navigate the uncertainty. She connected with family and friends who listened to her story with compassion, supported her decision making, and encouraged her to take this as an opportunity for personal growth. Gradually, she shifted her nutrition towards more fruits and vegetables. Walking became part of her daily routine, and she started taking a few dietary supplements like vitamin D and green tea extracts.
She nurtured her internal dialogue, cultivated self-compassion, and actively listened to the messages exchanged between her mind and body. In short, she has become more intentional in what might be called resiliency practices, nudged along through her personal research and reading authors like Byron Kattie and Louise Hay.
She also found a doctor who was more willing to listen. At the same time, it became easier for Tasha to say that she didn't expect infallibility, and that what she wanted was someone to share her journey as its inherent uncertainty unfolded.
So, where is Tasha at now in her journey?
As a result, she decided to not proceed with surgery that would have ended her chance at having a child. Her most recent ultrasound shows that the fibroid volume has shrunk by two-thirds. Her symptoms are noticeable only a couple of days a month and no longer dominate her life, and she is feeling confident that the impact on her fertility is likely to be minimal.
Even better, her journey has been a teacher. She has not simply returned to who she was before. She is a little wiser, more intentional in her daily choices, and more deliberate in making connection and nurturing her own narrative.
She feels better prepared for whatever comes next in her life.
Did her journey of healing and of self-discovery need to be so tortuous?
To answer that, consider the elements of her 'self-guided journey' and the key questions she learned to ask:
How certain is the science?
Uncertainty is inherent to medical science, and the tricky part is gauging which parts are better understood than others. In our world of evidence-based medicine, decision making is largely algorithm directed. This can be imagined as a series of steps and choices outlined on recipe cards. Imagine baking a cake for example with four different options for a leavening agent, and fuzzy directions on which one to use. Recognizing this inherent uncertainty is not science denial; rather it brings a thoughtful understanding of how science works, so it can be used to our best advantage.What are we missing?
Our medical care model has been widely described as a biomedical or biomechanical model, where illness is seen as defects that need to be identified, treated, and fixed. This works well for some things like the infections and trauma that dominated up until the twentieth century. Yet it often misses critical aspects of interconnected internal inflammation, which underlies most of the illnesses we now face today.How does it apply to my unique circumstances?
Given the built-in uncertainty, the unique aspects of the workings of my own biology become important for better healing and decision making.
With these in mind, how might it have worked for Tasha if early on she would have been asked, "Tasha, with all you are going through––the move away from family and friends, a new job, and now this fibroid tumor–– what do you think your body is saying to you?"
"I would have felt seen and dignified; showing respect for my body and my point of view. It would have empowered me in my own healing. Frankly, it would have encouraged me to look at myself more carefully as part of the healing process right from the beginning."
What if someone had said, "You know, Tasha, as we start discussing uterine fibroids and treatment options, it helps to begin by understanding the state of the science. There is plenty that we know about this condition that will help us. At the same time, there is quite a bit we don't know. To me, that means to make good decisions, we need to connect decisions to your unique story–– like it's always there, over your shoulder guiding you, guiding us."
"That would have been amazing. It would have lowered my blood pressure. It would have encouraged me to be more autonomous in my thinking. That acknowledgment would not have decreased my trust––it would have increased it."
What if the discussion then continued: "Evidence-based medicine can tell us a lot about fibroids. For example, they are the most common non-cancerous growth of the uterus. About 80% of women will have them during their lifetime, with a wide variation in how they grow and regress. We have some ideas about what factors might contribute, but we don't really know for sure what causes them."
The conversation might have continued, "So far, coping with fibroids has been primarily focused on a fairly narrow range of options including hysterectomy (with fibroids accounting for 40% of all hysterectomies)."
"We are now starting to understand that, just like for many other illnesses and conditions, for uterine fibroids, the interplay between your genes, lifestyle, environment, and epigenetics is all interconnected, and it's important that treatment and prevention be individualized to you." (see https://tinyurl.com/yahvsvra.)
Try it.
Once you become aware of these commonalities, it is hard to not see them elsewhere.
Common illness you or your family might be dealing with like cancer, heart disease, and diabetes are subject to the same issues.
The next time you are in an exam room, or searching for medical information, ask yourself:
How certain is the science?
What are we missing?
How does it apply to my unique circumstance?
As Tasha observes: "I am in a better place now because of the right kind of doubt. I think you should entitle this essay: The Benefit of Doubt."
