Illness uncertainty with Maddie Gravelle
How understanding the patient experience shines a light to a better path.
If you haven’t listened to the episode with Maddie Gravelle, please do. In this podcast, we learn that Gravelle’s research interest was influenced by her mother’s experience of dealing with both cancer and Lyme disease.
Although every illness comes with its own challenges, and every person’s experience of illness is as unique as their fingerprint, certain illnesses come with the added burdens of uncertainty and believability.
Patients with chronic illnesses such as Lyme disease are dealing with challenges related to testing and diagnosis as well a lack of treatment options that are both effective and available.
On top of these logistical hurdles, and partially because of them, many patients are also dealt another blow: their healthcare providers and sometimes their family and friends don’t understand their illness and sometimes can’t (or simply don’t) believe them.
As Gravelle’s research confirmed, this can have devastating effects on their health. Many Lyme patients know all too well the frustration of seeing many different specialists, having many tests, and still not getting any concrete answers or a one size fits all treatment plan.
It’s important to note that the health consequences related to illness uncertainty and believability are layered on top of the brain, nervous system and endocrine effects that are common in many tick-borne illnesses.
In addition to life altering symptoms that often come and go or migrate through different parts of the body, the issues of believability and uncertainty make recovery even more difficult.
It’s not surprising that many patients break down in tears the first time they see a physician that has a better understanding of their disease and validates what they’ve been through.
This podcast shines a light on this very real issue faced by many, if not most, Lyme patients.
The next steps include educating healthcare providers, and family and friends not only about Lyme disease, but also about the detrimental effects of illness uncertainty and believability.
Disease uncertainty is not only causing a massive problem, it is the problem.
Psychological supports are needed, but so are better education for healthcare providers and as always, more research. Hopefully, the science that is emerging around long COVID may provide some clues that make at least some aspects of chronic Lyme disease a little less uncertain and a lot more believable.
