The Communication Gap: Delivering Diagnoses or New Information
At Rareminds, much of what we hear in counselling is not always just about the challenges of coping with the condition itself. It often includes exploring (either for the first time, or again, years later) the way a diagnosis, or new information about a health status, was delivered. The significance of this personal diagnostic experience often shapes the emotional and psychological trajectory of what follows, sometimes for years.
Clients often describe news arriving ‘like a bomb dropped from a great height’, often with little or no further information that could help in processing this life-changing news. Even when a diagnosis has been sought or expected, the emotional impact and shock is still often considerable. When it is unexpected, this is even more so. Diagnostic experiences all too often carry some of the hallmarks of trauma such as remembering the fine (inconsequential) details of a room, background noises at the time, or what a healthcare professional was wearing.
Others are given the ‘possibility’ of a diagnosis before the evidence is in — ‘we think it might be this’ — only for further tests to rule something out either entirely, or an aspect of it. That psychological rollercoaster is also very challenging to overall mental health and wellbeing. Clients are often left bewildered and frustrated, and with difficulty then trusting in both future diagnoses, and healthcare professionals.
Sometimes throwaway phrases (both negative and positive) from a medical professional, often made ‘in passing’ may be ‘seized’ as a scrap of information in a sea of uncertainty, and then ruminated upon. These may then become imbued with more meaning than was intended. Whilst offering hope (perhaps of treatment, or about overall disease trajectory) is important, hope which is offered without caveats, further information, or contextualised, sometimes does more harm than good over the long-term should hopes be ‘dashed’. Equally, information or comments (made with good intention) to help manage expectations can sometimes be heard by someone already ‘fearing the worst’ as there being no hope at all.
We often hear of clients still being told ‘not to Google’ a diagnosis. Human nature and the current zeitgeist then guarantee this as almost inevitable. The absence of ‘little to no’ further information being provided by healthcare professionals – even if during consultations means the internet ‘fills the gap’ – whether or not that information is accurate, or up-to-date. Many of our clients arrive frightened and distressed by what they read online ( some of which may be contradictory or confusing) and with eroded trust and confidence in their medical team as a consequence. This is particularly when information, or access to treatments, is different across countries or regions. Without healthcare professionals being equipped to have nuanced and ‘difficult conversations’ about treatment and care with people who are often both very worried and very frightened, the containing function of the trusted medical team is inevitably compromised.
Even many years after diagnosis, clients often need to (re)tell the story in counseling of their diagnosis. It is a foundational experience, and fundamental to then reflecting upon how their rare condition is impacting on their life in the present. The profound and far-reaching impact of the diagnostic experience cannot be under-estimated.