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The following recommendations are drawn from the findings of our 2024 research into the needs and experiences of FND patients in Aotearoa.
The evidence is clear
Many medical professionals are not up to speed on this disorder. Even though you may not have been taught about this during your training, this disease is a real condition with real physical symptoms. Patients are not in control of their physical symptoms. Researchers are now able to observe changes in brain activity as well as structural changes to the brain .
Yes, patients may have unmet psychological support needs, but they also have serious debilitating neurological symptoms with real physical effects.
Neurosymptoms is considered the world's best resource on the subject. It's good hard science from Professor Jon Stone from Edinburgh University. Go have a read.
This is a podcast from Clinical Neurologist Matthew Phillips from Waikato Hospital. It is targeted at medics wanting to up-skill on FND.
Please believe your patients
Our research has clearly shown that if you imply that your patients symptoms are feigned, behavioural or somehow within a patient's control, you cause harm to that patient and their whānau. This harm occurs in four different ways.
This misinformation harms a person's sense of self
"If I cannot believe my own body, what can I believe?'
This misinformation harms the doctor/patient relationship
It will affect other areas of health care. They will withdraw from you and serious illness will go untreated.
This misinformation harms relationships within homes.
Misinformation rubs off onto loved ones and alienates family members from each other. Our people really need their family support.
This misinformation harms our communities
Misinformation leaks into communities and results in difficulties when our people seek to reintegrate into society during recovery, thereby prolonging illness and economic dependence.
Please make it clear that you believe your patients and you recognise how difficult the illness is. It's not sufficient to tell somebody that what is happening is not serious and to think happy thoughts.
Much of the resistance to an FND diagnosis is that patients feel that doctors don't understand the physical force involved in the symptoms.
For example, 'This is not in my head. This is my body".
Functional myoclonus can throw an adult body at speed across a room. The seizures feel like thundering freight trains. The experience is every bit as overwhelmingly powerful and involuntary as being in third stage labour. Let them know you understand this.
We have to start treating these consultations with as much care and priority as any other injury that can put somebody in a wheel chair for the rest of their life. Indeed our research suggests that between 270 and eight thousand people may become wheelchair bound in Aotearoa this year because of FND and most of them will not recover. It may be functional, but it is very real. Functional diarrhea is just as smelly and messy as the bacterial kind. It's the cause that's different. The lived experience is the same.
Tread carefully around trauma
While we acknowledge that trauma is connected to this problem, telling a distressed patient that they need to unpack past events is not helpful. If you are going to drop this bomb on people make sure they have the support they need to process this. It can take years to unpack this stuff. It's a major project that needs careful professional support.
Those of us living with the disorder know that exposing and 'treating' trauma events does not necessarily reduce symptoms. Many of us developed FND even after years of skilled therapy. Around 30% of our survey respondents had approved sensitive claims with ACC. This means that they are highly likely to be receiving skilled psychological care. Yet they develop FND and remain unwell physically.
If you explain to patients that their illness is a result of abuse they have suffered and then show them the door, this becomes a new and significant trauma in itself, even if they have never been hurt this way in the past. Psychological services are very hard to come by. You would be throwing them into a very dark and stormy sea with little hope of rescue.
We think that, at least in the early stages, you should shift the conversation away from trauma and towards recovery tools. Help them get grounded. They will find out about the relevance of trauma when they go home and start reading. When they are sitting in front of you emphasise positive things they can do to take control back. Explain that they have to:
consciously retrain themselves how to drive their brains
build self care into their lives
ask for, and receive help.
We suggest you say this:
"We don't really understand how this thing works yet, but we do know that this often happens to people who have had bad things happen to them in the past. Right now, the best thing you can do for yourself is brain first aid. Focus on recovery. Down the track, when you are feeling a bit better, it might help to find a professional to help gently work through things if there is something there".
This approach would meet the needs of both the trauma survivors, and patients who have led more peaceful lives. We believe it would increase understanding and acceptance of the diagnosis among both groups.
"Is there anything else that you want to tell me?"
It may be obvious to you that trauma is involved, but for most patients their traumatic history is far from their thoughts when this beast strikes. Their minds are focused on their bodies. Until they learn otherwise, and have time to process the information, they have no reason to suspect that long buried abuse could be involved. Indeed, the information they are receiving from their bodies contradicts the trauma theory. You cannot assume the absence of trauma if it is not reported. In most cases you have to ask directly and very kindly. We suggest several invitations for disclosure as patients have time to process the information you are giving them, away from their partners. It is completely insufficient to ask "Is there anything else that you want to tell me" when making decisions about this. That's a trick question. Gently make space for a disclosure, several times, over time.
Please look your patient in the eye
It must be very difficult for Doctors to be constantly exposed to human pain and tragedy. It is understandable that Doctors protect themselves by withdrawing personally. We argue that the unique and complex nature of this disorder necessitates a personal and warm approach. This is time to dig deep.
FND patients can still get sick with other illnesses
You must remain open to the fact that we can still get cancer and break our legs when we have FND. Please carefully examine your patients so that unrelated problems are not incorrectly recorded as psychogenic.
Our research showed concerning medical problems are overlooked this way and this results in devastating consequences.
Please choose your words carefully
Our research suggests that many of our people could have avoided significant long term suffering if their doctors had communicated with them more effectively at time of diagnosis. Very often, that 15 minutes with you is the only time your patient will have access to relevant professional support.
Effective communication during this time can save families years of pain, shame and instability, it can give children back their previously active parents and can alleviate a significant financial burden on our nation.
It wont hurt to tell your patient that you don't have the answers for them. They are human. You are human. Your admission is likely to improve your relationship and help their recovery. It's likely to help your patient set down any rumination they may have about finding answers if they know that science does not yet have them.
The main things you can do are to:
make sure they know you believe them
acknowledge the difficult and involuntary nature of the illness
approach trauma carefully
shift expectations away from being provided specialist treatment
encourage self managed recovery
explain that they need to consciously re-learn how to drive their brains
empower them with tools. Refer them to our website section on Recovery.
carefully examine new symptoms to ensure unrelated problems are not missed.
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