What should you tell your family and work about your symptoms?

It can be hard enough getting your head around what functional neurological symptoms/ FND is without having to explain it to other people.

Unfortunately, if you have something like a weak leg and people hear that the ‘tests are normal’, they may be less sympathetic or even start to wonder if you really have the symptom.

This can be extremely difficult to deal with as a patient. You know that the symptoms are real, that you experience a loss of control of your body. It makes it even worse to think that some people might be thinking you are in control after all.

It is worth thinking about how you are going to explain this to friends, family and employers.

One pragmatic approach is as follows:

1. Explain what FND is to close friends and family. They may be very worried about you and wonder if you have multiple sclerosis or epilepsy. If they are less worried then that may ultimately help you to feel more positive about your condition. They may be able to help you find out more about it or encourage you with your treatment. You may want to encourage them to read this website

2. For people who are not close friends and who are just being curious – a reply like, ‘I’m seeing a neurologist and hopefully things should start to improve’ may be enough to shut them up!
3. For employers / benefit providers / insurance companies – depending on your circumstances you may need to tell your employers what your condition is, especially if you have been off work for a while. They may not have a right to that information and may need your consent to obtain it.
4. For schools – letters for teachers explaining the nature of your condition can be helpful. This is especially the case for symptoms like seizures where bystanders may be frightened and sometimes over-react.

They may find this website helpful reading too.

It may be that your main issue is fatigue and that a doctor has diagnosed you as having Chronic Fatigue Syndrome. In this case, you may wish to emphasise this as the main cause of your disability.

Similarly, if your main problem is pain, and a doctor has diagnosed you with Fibromyalgia or a Chronic Pain Syndrome it may be more straightforward to highlight that as the main issue.

For FND, there is still a lack of awareness of the diagnosis which can sometimes mean that the diagnosis is not understood or accepted as it should be as a genuine cause of disability and/or distress. That is slowly changing

If you only have symptoms like weakness or blackouts then the official term for the condition which may be recognised by insurance companies or benefits agencies is Functional Neurological Symptom Disorder (Conversion Disorder) – DSM 5-300.11.

Functional Neurological Disorder (FND) has now gained a lot of acceptance as a term for example with charities like FND Hope, FND Action, FND Dimensions. We also have the international FND society – see the Links page