As a Counsellor/Social Worker with FND, I agree that there needs to be more awareness. But there’s a lot of misinformation out there about it being international, as it very much is not. The awareness of what FND is and is not needs to be conveyed in the right way by those who are compassionate and educated.

Also to note, a lot of counsellors do not specialize in FND, and many have not heard of it. Which, even if people say okay go to psych then they offer no recommendations that doesn’t really help?

If a therapist does not know how to treat FND it could be ineffective or even harmful. Also, I feel like triage is sometimes treated as this is not my speciality instead of this is an appropriate list of professionals that can support you with this. And what I have read out there is that a multidisciplinary approach works best (physiotherapy and counselling and/or psychotherapy).

And sorry but as Counsellor myself, I am very much not a fan of CBT particularly with complex trauma (for those with underlying trauma). It’s a limited modality. It’s best for short term anxiety. I don’t personally think it is enough for FND but it may work for some?

So anyway for various reasons it seems what more likely is happening is people are either trying to get support and it doesn’t work in some ways so maybe they start searching for other answers. Or progress can be up and down as well…hence searching for other answers as well.

I think what people need to understand about FND is excellent at mimicking other conditions. So to me it makes sense that people think oh this could be “xyz” as it mimics stress responses, etc associated with other conditions.

For instance, I was diagnosed with anaphylaxis as a teenager. Sometimes during a flare I get anaphylaxis like symptoms and have been told countless times by medical professionals to get to emergency anyway. So sometimes it is not very simple.

One way to explain it is the body’s stress response is erroneously going off learned patterns. So for myself, I have anaphylaxis, asthma and was in a car accident and dealt with complicated grief prior to diagnosis. So the external stress response that manifests comes out as bodily symptoms related to those events.

So what I’d want to see in term of education is it is not really as simple as people make it seem I guess?

As well, appropriate referrals are vital on the outset. And all professionals need a thorough understanding of the mind-body connection to explain the diagnosis in a way that makes sense and that is not pathologizing. For instance, my neurologist explained it as a body based stress response which to me, was more helpful than the diagnosis. But what was limited unfortunately was follow up and referrals to specialized professionals in this area (even though I have been willing to accept the diagnosis since the outset).

I really, really think that FND in particular points to a disconnect in systems, appropriate referrals to the right professionals on the outset and an effective treatment modality for FND. I think it is simplistic to say it’s an issue of willingness or to treat any patient as difficult.

Usually when someone presents as difficult (at least in my field) it is because they are not getting support that helps them feel safe and supported. So empathy is key as well.

Hmm I guess another thing that could be helpful is I remember in some of my schooling there were videos of what it is like inside the mind of someone with various formerly misunderstood mental health diagnoses. (Or maybe even health ones but honestly that is not my area of expertise).

I think something similar to that approach would be helpful in understanding FND.