Over the last five years, three people in my family have developed undiagnosed, long-term disabilities. All three of us rely on some form of mobility aid — usually a wheelchair — to get around. All of us have similar but not identical disease patterns. Recently, the geneticist we’re working with offered a working diagnosis under the umbrella of mixed connective tissue disorder, and she believes that within three to five years it should turn up on whole exome testing. The science of genetics is just not there yet for something this rare.
But since our test results are almost always inconclusive, over these last five years we have each been given “diagnoses” such as conversion disorder or functional neurological disorder. The theory is the body is reacting to long-term stress in ways that are “inorganic” — they don’t have a biological, but rather a psychological origin. If that is true — or to the extent that is true — it seems only fitting that psychology’s trauma-informed best practices should lead the way in terms of treatment methods. Here’s what I wish they’d said instead.
1. “We can see that you are sick.”
This is so important to start with. Much of the distrust that builds up between doctors and patients in the midst of undiagnosed illness stems first and foremost from the patient feeling dismissed. By beginning by acknowledging the real experience of the patient in front of you, it builds trust and lowers trauma, increasing the chances you as a caregiver will be able to effectively care for the person in question.
2. “Our tests can’t tell us why you’re sick.”
This is also true. Wording it this way avoids negating the sickness/weakness/pain etc. while still delivering the news — “We don’t know.” The inherent humility in the statement — the acknowledgement that we can only know what our tests can tell us today — is critical to keeping an open mind about what might or might not be going on for the patient in question. It encourages the medical practitioner to look beyond the tests to the lived experiences of the patient themselves, and this opportunity to “see” the patient goes a long way towards protecting against increased trauma.
Related: This Is What It Means to Be Undiagnosed
3. “Some things that have worked for some patients with similar symptoms in the past include… (physiotherapy, mobility aids, supplements, alternative therapies etc.)”
Giving patients a range of options without presuming there will be a one-size-fits-all approach helps to manage expectations and gives patients the opportunity to take back some measure of agency and autonomy — key strategies to minimizing trauma in the midst of stressful circumstances.
4. “Having an undiagnosed illness can be extremely hard for many people to deal with emotionally. Some of the mental health tools we have available for you include … (counseling, mindfulness, yoga, support groups etc.)”
While it is not “all in our heads,” we know stress is hard on the body, and there are long-term health correlations between stress and disease. So supporting mental health (whether it has a “causal” component to the illness or not) is beneficial for the patient’s long-term health and well-being regardless. This is yet another opportunity to reintroduce agency and autonomy into the patient’s care experience.
5. “While we don’t yet know what is causing this, we want to work together with you to find ways for you to live as full and healthy a life as possible. Let’s check back in with each other in … to see how things are going.”
The last thing anyone with an undiagnosed condition needs is to be dropped — sent back to their primary caregiver with a shrug of the shoulders or worse. We need to develop undiagnosed, multidisciplinary care teams that work across the diagnostic and treatment spectrum to provide evidence-based, patient-specific care that includes both affected individuals and their families.
It’s 2019. We can and should do better.