My daughter
I would like to share my daughter’s story and what Functional Neurological Disorder has done to her life over the past three years.
Before FND, my daughter was a creative, talented teenager who loved music, performing, makeup and hair. She had dreams for her future, just like every other young person. Shortly before she turned 16, everything began to change.
She started experiencing severe dizziness, fainting and episodes that were eventually diagnosed as functional non-epileptic seizures. During these episodes, her eyes may roll back, her body can stiffen, her hands curl, and sometimes she can hear what is happening around her but cannot move or respond. Afterwards, she may be unable to straighten her arms or walk properly for several minutes. At times, she has experienced paralysis and dissociation. On her worst days, she can have several episodes.
FND has affected nearly every part of her young life.
During a school music performance, she made it through only two songs before collapsing, hitting her head and having a seizure. While helping backstage with makeup on another occasion, she developed a severe migraine and passed out. At her job as a hostess, she struggled constantly with dizziness and fainting. An ambulance had to be called, and eventually she lost the job. At high school, there were many episodes, including one when she was unconscious for more than an hour. She was unable to complete Grade 12 in the way she had hoped.
Despite everything, my daughter continued trying.
She enrolled in hairdressing school because she wanted a future and something meaningful to work toward. But chronic dizziness, pain, extreme fatigue, fainting and seizures made regular attendance almost impossible. There were days when she got dressed and tried to leave, only to become too unwell to make it through the door. After trying again and again, she recently had to withdraw for six months.
Alongside FND, my daughter has also been dealing with Crohn’s disease, severe gastrointestinal symptoms, vomiting, diarrhea and significant weight loss. She went from approximately 117 pounds to 99 pounds. She also lives with chronic jaw, neck, shoulder and back pain, migraines, insomnia, anxiety and depression. Heat, pain, overstimulation, emotional distress and simply feeling physically unwell can trigger her FND symptoms.
Recently, very low blood pressure and dehydration left her extremely dizzy, weak and fainting repeatedly. After receiving IV fluids, I saw a glimpse of my daughter that I had not seen in a very long time. She was laughing and told me, “Mummy, I feel so much better.” It was wonderful—but also heartbreaking to realize how long she had been feeling so terribly unwell.
One of the hardest parts has been trying to find appropriate treatment. My daughter has been assessed by many doctors, yet we have repeatedly encountered long waiting lists, services that cannot accept her because she is still having seizures, and professionals who say the seizures must stop before treatment can begin. But how are they supposed to stop without proper treatment?
FND is real. The symptoms are not imagined, deliberate or something a person can simply decide to overcome. A normal MRI or EEG does not mean the suffering is not real. My daughter has lost her education, employment, independence, friendships and many ordinary teenage experiences. She cannot reliably attend school, work, go shopping, enjoy a festival or make plans without wondering whether her body will suddenly stop cooperating.
As her mother, I have watched her fight every single day. I have caught her when she fainted, stayed beside her through seizures, taken her to hospitals and appointments, searched constantly for help, paid privately for treatment when possible and advocated until I felt I had nothing left—and then continued because she needs me.
We are now trying to build our own team around her, including occupational therapy and other supportive care, while continuing to search for knowledgeable FND treatment. We have not given up hope. My daughter is still the beautiful, funny, artistic and loving young woman she has always been. FND has changed what her life currently looks like, but it has not taken away who she is.
I am sharing her story because people living with FND deserve to be believed. They deserve informed doctors, timely treatment, rehabilitation and multidisciplinary care. Families should not have to navigate this devastating condition alone.
My greatest hope is that my daughter will receive the care she needs to regain her independence and begin building the future she deserves.
If you are living with FND—or caring for someone who is—please know that you are not alone. 💜
Thank you for sharing your daughter’s story, Lara. Whatever conclusions people may reach about FND as a diagnosis, there should be no disagreement about the reality of what your daughter is experiencing or the enormous impact it has had on her life.
One of the purposes of this site is to examine the evidence, uncertainty and reasoning surrounding FND diagnosis. That scepticism should never be confused with scepticism about the symptoms or suffering of people who have received the diagnosis. Stories from people who accept the diagnosis are just as important to that discussion as stories from those who question it.
If you are comfortable sharing, we would be interested to know how her FND diagnosis was established and what evidence or positive clinical signs the doctors used to reach it.
We sincerely hope your daughter receives the care, support and answers she needs, and that she has the opportunity to return to the things she loves.