Family Member Frequently Asked Questions

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Refer to general FAQs or our extensive resources for more information:

FND Resources

FAQs

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There is no “one size fits all” answer as every person is different. We recommend using our Seizure Action Plan (linked below) to determine helpful ways to respond during a seizure. Often, the best thing you can do is ask your loved one how you can be supportive of them.

Seizure-action-plan

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This is a complicated question that depends on the person, their commitment to treatment, and their understanding and acceptance of the FND diagnosis. Successful treatment of FND relies on many factors including, but not limited to: engagement in treatment, engagement with behavioral health, family support, believing and understanding the FND diagnosis, and management of other health and/or psychiatric conditions.

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Be willing to listen and understand the needs of your loved one even if you don’t understand what it is like to have FND, recognize your role in the support of your loved one with FND, and support your loved one through treatment. FND is not intentional. Absolutely avoid using terms like faking symptoms or being intentional with seizures and/or movements.

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If there are children who spend time with or are being cared for by someone living with FS or FMD, there are some important considerations to keep in mind.

Depending on the person’s specific symptoms and care plan, there may be safety precautions or driving limitations in place. It’s important to follow any guidance provided by your healthcare team regarding how to maintain a safe environment—especially when children are present.

Some families may worry that a child witnessing a seizure or movement episode could be emotionally affected. While these concerns are understandable, open and age-appropriate communication can help children feel informed and reassured. Depending on their developmental stage, it can be helpful to explain that the symptoms are part of a health condition and that the family has a plan for managing them. Encourage children to share how they feel, and validate any emotions such as fear, confusion, or concern.

It’s also important to remind children that it is not their job to fix or take care of their loved one’s health. Reinforce that adults are responsible for managing the condition and that the child will always be cared for and have their needs met.

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We don’t currently know of any genetic cause for FND.

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For families struggling, there are some supportive resources available you may qualify for that you can discuss with your provider. Some examples are: disability for the person with FND, FMLA for the family member, employment resources, or vocational rehab. Disability is a long process that often requires the help of a lawyer and is best advised on by primary care providers.

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It is important for loved ones to practice self-care. Just because a loved one is affected by FND, does not mean other loved one’s needs should go unmet. This can be a complicated balance in a family. FND can change family roles and responsibilities which can change family dynamics. It is important for anyone taking care of someone with FND to consider asking for help caring for a loved one with FND when they need it.

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There is, unfortunately, stigma surrounding this illness. Being supportive as well as listening to and validating the experience of a loved one with FND can be helpful. When speaking to others about your loved one’s FND, do not suggest it is not real, being faked, exaggerated for attention, or their own fault. This only reinforces the stigma of this illness. FND is very real and is involuntary.

For FS patients, if a seizure  is to occur in a public setting, follow your nonepileptic seizure action plan and support your loved one by controlling their surroundings and other’s reactions to the situation. Do not go to the emergency department unless there is a physical injury that requires emergent care. If your loved one also has epilepsy, follow your epileptic seizure action plan.

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Do not feel pressured to share details about FND when you are not comfortable. When you do feel ready, sharing may help loved ones better understand and be supportive. FND can be described to loved ones as:

The body’s way of protecting itself or as an involuntary defense response.

The brain has created and practiced these pathways in response to certain situations and now needs to learn new ways of responding differently.

For FS patients, physically, a seizure is occurring but without the electrical abnormalities in the brain that can be measured on EEG Instead, FS is caused by the brain’s involuntarily trained response. Studies are being done to better understand the best way to measure this response.

Everyone’s situation is unique with endless possibilities of causes, triggers, and experiences with FND. It is important to only share with family what feels true to the person with FND and their individual experience.