“Iatrogenesis” comes from the Greek words iatros (doctor) and genesis (origin). It is mostly used to refer to negative health outcomes that origionate because of healthcare itself.
When people with functional symptoms enter the health-care system, it has been observed that they are at particular risk of iatrogenic harms. There are different ways in which healthcare can do more harm than good:
Harm from over-testing or inappropriate treatments
It is a natural to want to do everything you can for your health.
Many people hope that more tests or treatments will lead to better results.
But more healthcare doesn’t always mean better healthcare.
Sometimes, tests or treatments are done because of anxiety (the patient’s or the treating team’s), a misunderstanding about what actually helps with functional symptoms, or just the strong norm that something should be done.
Trying to “do everything possible” can sometimes cause more harm than good.
The truth is, every medical procedure—even small ones—carries some risks. And with functional symptoms, things like surgery or other invasive treatments can actually make symptoms worse instead of better.
You can read an example of this in Aimee’s story.
Being made to feel like you are the problem.
It is best if you are able to trust your healthcare team have your best interests at heart. But this is not always possible. Many people are forced to navigate healthcare within an atmosphere of distrust.
This can happen when doctors feel pressured and can’t provide all the help you need. Health-care professionals like to feel useful and helpful. When they can’t, they might feel bad about this and let the bad feelings effect the relationship you can build together. Perhaps you come away feeling blamed, or like you have done something wrong, without quite understanding why.
Unfortunately, people with functional symptoms face stigma as well, as some healthcare professionals still hold old-fashioned negative views about functional disorders and the people who struggle with them.
There are various ways this stigma can show up in the clinic (othering, denial, non-explanation, minimising, norm-breaking or inappropriate psychologising).
This stigma can be worse if you’re a woman, younger or older, have difficulties with your mental health, or are struggling with money/unemployment (i.e. groups that are already subject to marginalization.)
You can read an example of this in Ava’s story
This stigma can also play out on a systemic level.
Stigma that functional disorders are ‘not real medical conditions’ prevents healthcare professionals getting proper training in their explanation and management. This perception also holds back research and funding, which may be why there are so few specialist services to help people with these conditions.
The harms of non-explanation
Functional symptoms are known to improve when patients feel understood by their treating team and when they find an explanation that makes sense.
However, healthcare professionals do not always learn enough about managing functional symptoms in their training.
In addition, the way clinics are organized can make it difficult for health professions to see ‘the big picture’ and share helpful explanations. Functional symptoms are complex, and not easy to assess and explain in short appointments.
As a result many people leave healthcare appointments without clear explanations about what is going on in their body to cause symptoms, and no sense of the way forward.
This can lead you to feel like your symptoms are a mystery. Mix that with a little anxiety and you are stuck in a loop, waiting for Dr House to come along and diagnose you with some rare and terrible condition.
It also makes it very hard to plan life and explain your situation to friends, family, employers or the social system.
You can read an example of this in Terence’s story.
The harm of getting diagnoses that limit you
A diagnosis can initially feel like a relief, but diagnosis is more than just a (simple) label for a condition. Diagnosis also shapes how people see themselves, and how they’re seen.
When a doctor give a diagnosis to a patient, it will effect them. Often, consciously or unconsciously, they will begin to rearrange their identity, and reassess their life plans.
If diagnoses are appropriate and necessary, then this identity shift can be helpful.
However this benefit should be weighed against the downsides of collecting ill-fitting diagnoses. Every new ‘label’ might burden you and restrict how you imagine your future, un-necessarily.
Side effects from medicine
People with functional disorders can sometimes end up taking a lot of different medications. This is called polypharmacy.
Polypharmacy can arise from a desire of multiple doctors/patients to want to try every possible treatment, even if there’s little evidence that some of the medications will actually help.
It is often easier or more satisfying to start a medicine than to stop one that isnt working. This means over time, prescription lists have a habit of getting longer!
We don’t always know how different medications affect each other, especially when taken together. In addition, people with functional symptoms can be particularly sensitive to side effects.
Things get more confusing when new symptoms appear. Sometimes, side effects from medicine are mistaken for part of the functional disorder. This is one example of diagnostic overshadowing—when everything is blamed on the original condition, and other causes are missed.
The harm of diagnostic overshadowing
Diagnostic overshadowing is where you have been given a diagnosis, and healthcare teams put all your problems down to this.
This can happen to people who have a diagnosis of a chronic health condition, a metal health condition or a functional disorder.
Although diagnostic overshadowing is not a problem that you create, you can help by explaining clearly if you think a new symptom or health problem is unconnected to previous diagnoses. It is important to advocate for yourself. If someone doesn’t listen or take you seriously, don’t give up – try to find someone else who will or bring someone with you for support and back-up.
The frustrations of fragmented care (Falling between the gaps)
Modern healthcare systems are split into specialties that deal with the diseases of a single organ system.
Functional symptoms tend to effect multiple organ systems. Current practices around who should provide care for patients with functional symptoms vary widely between (and even within) healthcare systems.
In many places specialist services treating functional disorder do not exist and there can be very different attitudes and arrangements even within a single hospital.
Patients are often caught between services, or referred from one service to another, without a clear understanding of who is supporting them or why. This creates a sort of health limbo, where you are be going to many different assessments and without getting meaningful answers, treatment or support.
Some have even suggested that the way western healthcare is set up, creates the conditions for symptoms to persist.
