FND Advocacy and Practical Ways to Be Heard

Being asked to explain FND when you are exhausted, in pain, dealing with brain fog or recovering from an episode can feel like being given another job you did not choose. FND advocacy is not about having the perfect words, proving that you are unwell, or arguing with every person who misunderstands. It is about helping the people around you understand what you need to be safe, respected and supported.

You are not making this up. FND symptoms can be real, disabling and unpredictable, even when they are invisible or fluctuate from one day to the next. Advocacy can create a little more room for your reality in appointments, workplaces, education settings and relationships.

What FND advocacy can look like

Advocacy means speaking up for your needs, but it does not always mean speaking out loud or doing it alone. It might mean taking a short written note to a GP appointment because words disappear under pressure. It could mean asking a partner to explain what happened during a functional seizure, or requesting adjustments at work before symptoms reach crisis point.

Sometimes advocacy is simply correcting a harmful assumption. For example: “My symptoms vary, but that does not mean they are voluntary,” or “I may look well today, but I still need the adjustment we discussed.” You do not owe everyone a detailed explanation of your medical history. A clear statement of what helps is often enough.

There is a difference between self-advocacy and having to constantly defend yourself. The first is a practical tool. The second can be draining, unfair and sometimes unavoidable in systems that do not yet understand FND well enough. If a conversation becomes dismissive or unsafe, it is reasonable to pause, bring someone with you, ask for concerns to be recorded, or seek further support.

Start with the need, not the whole story

FND is complex, and it can be tempting to explain every symptom, test, referral and difficult experience before asking for help. Yet in many situations, leading with your practical need makes it easier for someone to respond.

At an appointment, you might say: “I need extra time to process information and write down the plan.” At work, it may be: “My mobility and fatigue fluctuate, so I need flexibility around start times and rest breaks.” At college, it could be: “If I have an episode, please follow my agreed plan and give me space rather than crowding me.”

This does not minimise what you have been through. It gives the other person a useful starting point. You can decide how much information to share based on your comfort, the setting and what is required. A manager may need to know what adjustments enable you to work, but not every detail of your diagnosis. A clinician needs a fuller picture, especially where symptoms have changed.

Build a short advocacy note

A one-page note can reduce the pressure of having to remember everything on a difficult day. Keep it in your phone, bag or appointment pack. It can include your diagnosis, your main symptoms, the way they affect daily life, what support helps and any communication needs.

For functional seizures or episodes, it may also help to include what they usually look like, what people should and should not do, how long recovery can take, and who to contact if needed. Make the language your own. The purpose is not to produce a clinical document. It is to give people a calm, accurate guide when you may not be able to explain in the moment.

Preparing for NHS appointments

Appointments can move quickly, particularly when you have waited a long time for them. Before you go, choose the one or two outcomes that matter most. You might need a referral, clarity about a treatment plan, help with a fit note, discussion of medication effects, or written evidence of how symptoms affect function.

Write down recent changes, specific examples and questions. “Fatigue is worse” is valid, but “I now need two days to recover after a short outing and have missed three appointments this month” can help show the practical impact. If you track symptoms, bring a simple summary rather than pages of raw information. Patterns around episodes, sleep, pain, medication changes, activity and recovery can make a more focused conversation possible.

SeizeControl, FND Connect’s private daily tracking tool, is designed to help people record functional seizures, episodes, symptoms and medication context, then create a summary that is easier to take into an appointment. Tracking is not about monitoring yourself relentlessly or trying to find fault in every difficult day. Used gently, it can help you notice patterns and communicate what has been happening between appointments.

It is also okay to take another person with you. They can make notes, prompt you about your questions, describe what they have seen, or simply provide reassurance. Ask the clinician to explain unfamiliar terms and to write down agreed next steps. If you leave feeling unsure, it is reasonable to ask: “What happens next, who is responsible, and when should I follow up?”

Advocacy at work, education and home

The right support depends on your symptoms and your setting. Someone with functional weakness may need changes to physical access. Someone living with cognitive symptoms may need written instructions, a quieter environment or extra time. A person whose functional seizures are frequent may need an agreed response plan and time to recover afterwards.

At work, practical adjustments can include flexible hours, home working where suitable, paced workloads, rest breaks, adapted equipment, reduced travel, changes to duties or a phased return. Not every adjustment will be possible in every role, and some may need to be reviewed as symptoms change. The key is to focus on what removes barriers, rather than judging your ability by what you can manage on your best day.

For family and friends, advocacy can be more personal. You may need to say that cancelling plans is not a lack of care, that encouragement is helpful but pressure is not, or that you want company without being treated as fragile. Loved ones often want to help but may be frightened or unsure. A straightforward conversation about what support looks like can protect both your energy and your relationship.

When someone does not understand

Dismissive comments can cut deeply, particularly when you have already spent time seeking answers. You may hear that symptoms are “just stress”, that you are too young to need help, or that looking well means you must be well. FND is not a choice, and fluctuating symptoms are not evidence of exaggeration.

You do not have to educate every person. Save your energy for situations where an explanation could lead to meaningful support. A prepared phrase can help: “FND affects how my nervous system functions. My symptoms are real, and they can change from day to day.” If someone continues to dismiss you, consider whether a written explanation, an advocate, a manager, a carer or another clinician can help move the conversation forward.

Formal routes may sometimes be needed, such as asking to speak to a senior member of staff, using a workplace procedure, or requesting that concerns are documented. These routes can take energy, so choose them carefully and seek support where you can. Being believed should not depend on how calmly you can explain yourself while unwell.

Safety comes before advocacy

Knowing your usual FND symptoms can help you and those around you respond with more confidence. But new, severe, prolonged or different symptoms should not automatically be assumed to be FND. Seek urgent medical advice for symptoms that are new or concerning, especially severe chest pain, significant injury, breathing difficulties, a suspected stroke, or an episode that is markedly different from what is usual for you.

If you have functional seizures or episodes, agree in advance what supportive care looks like and when emergency help is needed. This can reduce panic while still taking your safety seriously.

Advocacy does not have to be brave, polished or public to count. It can be a note handed over at reception, a boundary set with someone you love, a symptom record shared with a clinician, or the decision to ask another person to speak beside you. Each is a way of saying: my needs are real, and I deserve support that meets me where I am.