Tips for Patients

We are so sorry this is happening to you 

First off - you are probably going to get better but it could take a while. Your best chance to get there is to employ patience and a zen-like detachment from your own suffering.  

This is a difficult to achieve, we know. There are such conflicting views about is happening to you. Many of the ideas circulating are less than flattering. Remember your Doctors are people too. Their knowledge is limited, and in many cases, flawed. Things are changing and some are being left behind. 

Try to be clinical and think of this disorder as a fascinating science problem that you are observing in a detached way. 

The more your mind fuses with the problem, the more it gets stuck in your thoughts, the more this will get stuck in your body. 


Don't believe the bullshit

It is likely that medical professionals will suggest somewhere along the line that you are faking your symptoms, behaving badly or seeking attention. This happens to most of our people. 

Please do not take this stuff on board. We have a problem with this particular disorder. FND has not been taught in medical schools, but somehow disinformation about this condition has been handed down like Chinese whispers since Freud. 

If you are feeling strong enough, please challenge them to do a bit of reading. Send them to www.neurosymptoms.org. It's going to take a lot of micro-protests to shift the culture around this. 

You can feel confident standing up to your doctor and telling them that their approach to your illness is both archaic and harmful. 

If you believe the bullshit it can really hurt your recovery. 


Your time now 

If you are like many of us, you have spent much of your life trying to make other people happy. Many of us have struggled with boundaries. FND often pops up in over-full lives. 

This is the time for you to look after your self - body, mind, soul and spirit. FND often indicates our life needs a major renovation. Never mind if you cannot afford to do this. You have no choice.

Sleep as much as you need to and don't feel guilty about it. 


Birds eye view

It is not helpful to spend time examining your symptoms close up. It helps nothing to count seizures, graph jerks or time your paralysis. By doing so you are bringing your mind's attention to the thing were need to draw it away from.  

Instead of close up examinations, try going up high to take a birds eye view of your life. Look at all the parts at once. Where are the hot spots? Where are the messy areas? What is draining your energy? What is holding you back?

FND often occurs in people who have been coping with difficult circumstances for a long time. Therefore some say that that FND symptoms are the brains efforts to let off steam. 

Putting out fires in your life should result in less steam.


Back yourself when seeking medical help 

Often doctors may dismiss unrelated problems as being caused by FND. Don't let them do this. Educate yourself about what can, and can't, be caused by FND. If you don't know, talk to us about it. 

If you have something new that worries you, please seek medical advice. If they say it's your FND and that doesn't feel right, push back. Your life may depend on it.

If you are in a complicated situation, we advise you to take a notebook. Take along the list of things to you need to talk about. Then when you leave, record what they said, the date, time and names. Use the same notebook next time. This helps your own overstretched brain keep track. It also provides a resource if you need to ask for help from an advocate at a later date. 

It is legal for you to record a conversation with a medical professional if the conversation is about you. If you feel that you need to record what is happening please do so. Netsafe sets out in this page how to go about recording digital evidence. Medics do not have the right to take your phone,  but you do not have the right to take video or photos of staff or other patients. If you stick to recording audio of conversation that is about you,  you should be alright.

You can get AI to convert audio recordings into text documents and keep these as records. 


FND hacks from the support group 

The following information is not scientifically tested for FND. Please talk with your Doctor before taking any new medication or supplement. They can interact with your other medications and with each other. 

These are anecdotes and recommendations from our group members. We were asked to include this section on the site, but we would like to stress we have no evidence to support this information: