What should you tell your family and work about your symptoms?
It can be hard enough getting your own head around what functional symptoms are 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. Try to explain it all 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 "nosey parkers" - 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.
They may find this website helpful reading too.
It may be that your main problem is fatigue in which case calling the problem 'Chronic Fatigue Syndrome with functional neurological symptoms' may help define it for everyone.
If your main problem is pain, calling the problem 'Chronic Pain with functional neurological symptoms' may help define it
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.
Conversion Disorder is a psychiatric term. You are probably heaving a sigh at this point or about to throw something at the computer. Please don't. Instead read "All in the mind?" again
Conversion Disorder describes functional and dissociative symptoms like weakness, numbness. movements and blackouts. It is based on a psychiatric idea promoted by Sigmund Freud that patients with these symptoms are stressed and in order to relieve that stress they convert it into physical symptoms.
Most people who do research on this condition think that in most patients these ideas are not correct.
However, the term is recognised and you may need to use it in official documents.