Supporting Someone with FND
A guide for family and friends
When someone you care about is diagnosed with Functional Neurological Disorder, you may have questions that are difficult to ask.
What is happening to them? What should I do when their symptoms become worse? Should I encourage them to do more, or help them to rest? What if I say the wrong thing? How do I support them without taking over?
These are reasonable questions.
FND can affect movement, sensation, speech, memory, concentration, energy and episodes of altered awareness or functional seizures. Symptoms may be disabling. They may also change considerably—from one day to another, or even within the same day.
This can be confusing for the person with FND and for everyone around them.
You do not need to have all the answers. You need enough understanding to believe the person, enough calm to respond helpfully, and enough respect to support them without taking over.
Begin by believing them
FND is a genuine neurological disorder. The symptoms are real and involuntary. They are not imagined, fabricated or deliberately produced.
FND is associated with changes in how networks within the brain function and communicate. It is often described as a difficulty with the functioning of the nervous system rather than damage to its structure. This is why routine scans can appear normal even when a person is experiencing significant weakness, tremor, pain, seizures, difficulty walking or other symptoms.
Normal investigations do not mean that nothing is wrong.
For many people, being believed is one of the most important forms of support a family member or friend can offer.
Understand that symptoms can fluctuate
A person may be able to walk, speak, work or socialise on one occasion and struggle to do the same thing later. This does not mean that the earlier difficulty was exaggerated or that the person is not trying.
The nervous system is dynamic. Symptoms can be influenced by fatigue, pain, illness, sensory stimulation, attention, emotional distress, physical demand and many other factors. Sometimes the reason for a change will be apparent. Sometimes it will not.
Try not to use a better day as evidence against a difficult one.
Instead of saying:
“You could do this yesterday, why not now?”
You might say:
“I understand that today is different. What would make this more manageable?”
Learn together—but do not turn life into a clinical project
Reliable information can reduce fear. It can give the family a shared language and help everyone understand the diagnosis.
It is useful to learn:
what FND is;
which symptoms affect the person you know;
what their clinicians have advised;
what tends to help during a difficult episode;
when medical assessment is needed; and
what the person wants others to do—or not do.
However, there is a balance.
The person with FND is still the person you knew before the diagnosis. They may not want every meal, visit or telephone call to become a discussion about symptoms, appointments or recovery.
Continue to share ordinary life wherever possible. Talk about work, family, sport, films, books, gardens, plans and the things that have always connected you.
Support should make room for the person, not allow the condition to occupy the whole relationship.
Ask what support is actually helpful
People often help in the way they would want to be helped. That is generous, but it may not be what the other person needs.
Ask specific, manageable questions:
“Would you like help with this, or would you prefer more time?”
“Do you want me to come to the appointment or wait for you outside?”
“Would reducing noise or light help?”
“What should I do if this happens again?”
“Would you like advice, practical help or simply some company?”
These questions preserve choice.
“Tell me if you need anything” is kindly meant, but it places the work of identifying and organising help back onto someone who may already be overwhelmed. A concrete offer can be easier:
“I can drive you to the appointment on Thursday or bring dinner on Friday. Would either help?”
Help without taking over
FND can affect confidence as well as physical function. When somebody has fallen, experienced a seizure or suddenly lost the ability to do something familiar, it is understandable for everyone to become cautious.
Families may begin doing more and more for the person in an effort to keep them safe. Sometimes this is necessary. At other times, too much assistance can unintentionally reduce confidence, independence and opportunities to practise recovering function.
The aim is not to withdraw help. It is to provide the right amount of help.
Where it is safe and consistent with clinical advice:
ask before stepping in;
allow time for the person to attempt a task;
support participation rather than expecting perfect performance;
break difficult activities into manageable steps;
notice effort and progress without turning them into a test; and
agree what genuine safety concerns require assistance.
Independence does not mean doing everything alone. It means retaining as much choice, agency and participation as possible.
Responding when symptoms become worse
It helps to agree a plan during a relatively settled period rather than trying to make every decision in the middle of an episode.
A useful general approach is:
Stay calm. Your tone and pace can help make the situation feel safer.
Check immediate safety. Move hazards where possible and protect the person from injury.
Follow the agreed plan. Ask the person and their clinical team what usually helps for their established symptoms.
Reduce unnecessary stimulation. Noise, bright light, multiple questions and several people speaking at once may make it harder to recover.
Allow time. Do not demand an immediate explanation or repeatedly test whether the symptom has passed.
Seek appropriate medical help when needed. New, significantly changed or concerning symptoms should not automatically be assumed to be FND.
The person’s treating clinicians should advise when emergency assessment is required. Call your local emergency service if there is serious injury, difficulty breathing, an immediate threat to life, or another reason to believe urgent medical care is needed.
If the person experiences functional seizures
Functional seizures are real, involuntary episodes. They are not epileptic seizures, although some people can have both functional seizures and epilepsy.
Ask the person and their clinician to create an individual plan. Family members should know:
what the person’s usual episodes look like;
how long they commonly last;
how to keep the person safe;
whether touch, talking or reducing sensory stimulation helps;
when an episode is different enough to require medical assessment; and
whether the person also has epilepsy or another condition requiring separate treatment.
During a seizure-like episode, protect the person from injury, do not restrain them and do not place anything in their mouth. Once immediate safety is established, follow their agreed care plan.
An unfamiliar first episode, a serious injury, breathing difficulty, an episode in water, or an event that differs substantially from the person’s usual pattern requires appropriate medical advice or emergency assistance.
Support treatment without becoming the treatment
FND care may involve neurology, physiotherapy, occupational therapy, psychological therapy, speech and language therapy, pain management or rehabilitation. The right combination depends on the person and their symptoms.
Family and friends can help by:
providing transport where needed;
helping the person prepare questions for appointments;
taking notes, with permission;
supporting agreed exercises or strategies;
helping clinicians understand changes observed at home; and
encouraging continuity when progress feels slow.
But you are not expected to become a neurologist, therapist or case manager.
Treatment remains the responsibility of appropriately qualified professionals working with the person. Your role is to support, not monitor, interrogate or enforce.
Use encouragement carefully
Encouragement can help. Pressure usually does not.
“You must try harder” assumes that effort is the missing ingredient. Often it is not. The person may already be using considerable effort simply to manage pain, fatigue, movement, concentration or fear of another episode.
More helpful language might be:
“Would it help if we tried one part of this together?”
“There is no need to prove anything to me.”
“I can see that this is difficult. What feels possible today?”
“We can stop, change the plan or try again later.”
Hope matters, but hope does not require pretending that everything is easy.
Notice progress without measuring the person constantly
Recovery from FND is not always linear. There may be improvement, setbacks, plateaus and periods when the person is managing symptoms rather than reducing them.
Progress can include:
understanding the diagnosis more clearly;
becoming less frightened by symptoms;
learning what helps;
returning to an activity in a modified way;
recovering more quickly after an episode;
communicating needs more confidently;
attending treatment consistently; or
rebuilding trust in the body.
Celebrate progress when the person wants to celebrate it. Avoid making every action evidence of recovery or relapse. Being watched closely can create pressure and make ordinary life feel like an assessment.
What can unintentionally make things harder
Most unhelpful responses come from fear, confusion or a genuine wish to make things better.
Try to avoid:
questioning whether symptoms are real;
describing FND as “just stress” or “all in the mind”;
repeatedly looking for a hidden psychological explanation;
telling the person to ignore symptoms or think positively;
comparing them with somebody else who has FND;
insisting that one treatment should work for everyone;
doing everything for them without asking;
treating every familiar symptom as a crisis when an agreed plan exists;
assuming every new symptom must be FND;
discussing the person’s condition with others without permission; or
making recovery the price of continued patience and support.
If you get something wrong, acknowledge it and begin again. Families are learning too.
Difficult conversations
FND can alter roles within a family. A partner may become a carer. A parent may become responsible for organising appointments. Children may notice more than adults realise. Work, finances, intimacy, parenting and plans for the future may all be affected.
Avoiding these subjects does not make them disappear.
Choose a relatively calm time and speak from your own experience rather than accusing the other person:
“I care about you, and I am finding parts of this difficult too. Can we talk about what support each of us needs?”
The person with FND should not be blamed for having symptoms. Equally, family members should not be expected to have limitless emotional, physical or financial capacity.
Honest, respectful conversations are part of sustainable support.
Look after your own capacity
Caring can involve love, worry, practical responsibility, interrupted sleep and difficult decisions. It is possible to care deeply and still feel tired, frustrated, sad or frightened.
Looking after yourself is not abandonment.
You may need:
accurate information;
time away from caring responsibilities;
help from other relatives or friends;
your own medical or psychological support;
advice about work, benefits or caring responsibilities;
contact with other carers; and
permission to maintain your own relationships and interests.
One person should not become the entire support system. Where possible, share practical responsibilities and identify who can help with transport, meals, children, paperwork, companionship or appointments.
Support that exhausts the supporter will be difficult to sustain.
Create a shared FND support plan
Write this with the person rather than about them. Keep a copy somewhere accessible and review it when circumstances change.
About the person
Name:
Preferred emergency contact:
Relevant clinicians and contact details:
Other important medical conditions:
Allergies and essential medication information:
Usual FND symptoms
What symptoms commonly occur?
What does a typical episode look like?
How long does it usually last?
What helps?
What tends to make the situation harder?
Communication
Can the person speak and understand normally during an episode?
If speech is difficult, how do they prefer to communicate?
Do they want questions, reassurance, quiet or time alone?
Practical support
What should family or friends do?
What should they avoid doing?
What assistance is needed after an episode?
What can the person usually do independently?
Medical help
What is part of the person’s familiar FND pattern?
What changes require advice from their clinical team?
What circumstances require urgent or emergency help?
The plan should reflect advice from the person’s own clinicians. It is not a substitute for medical assessment.
Trusted resources for families and friends
Neurosymptoms
Professor Jon Stone’s patient information website explains FND symptoms, diagnosis and treatment in accessible language. It is useful when family members need a reliable introduction or want to understand a particular symptom.
FND Hope International
FND Hope provides information for patients and caregivers, international education and online community activities. Its programme changes, so check the current events calendar for caregiver or family meetings.
FND Action
This UK charity provides practical information, community support and resources for people affected by FND, including families and carers.
FND Hope UK
FND Hope UK offers information, online support services and practical resources for people living with FND and those supporting them.
FND – What Now? NPC
Founded by Audrey Bart, this patient-led South African non-profit offers free online support-group meetings, patient and carer information, an FND Support Group Handbook and resources developed for the South African context.
FND Australia Support Services
An Australian organisation offering FND information, lived-experience perspectives and practical support.
Carers UK
Carers UK provides information about caring responsibilities, employment, finances, wellbeing and access to local support. It is not FND-specific, but it may help with the practical consequences of becoming an unpaid carer.
Carers Trust
Carers Trust connects unpaid carers with a network of local organisations across the UK. It also offers information for adult and young carers.
If you live outside the UK, ask your healthcare team or national health service about local carers’ organisations, financial assistance, respite support and rights at work.
A final thought
FND asks families and friends to hold two truths at the same time.
The person may need real help. They also need the opportunity to retain agency, dignity and participation.
Good support is not about finding the perfect response to every symptom. It is about learning together, responding calmly, speaking honestly and remembering that the person remains more than their diagnosis.
You do not have to fix FND in order to make a meaningful difference.
Medical note: This article provides general information and does not replace advice from the person’s own healthcare professionals. New, severe or substantially changed symptoms should be assessed appropriately rather than automatically attributed to FND.
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