Two women from the Armagh area living with Functional Neurological Disorder (FND) are calling for greater understanding after years of painful and disabling symptoms, difficult medical journeys and accusations that their condition is not real.
Colleena Loughran, 33, and Emma McAnallen, 44, have both been diagnosed with FND after struggling to find answers for deteriorating health. They are now trying to challenge public perceptions and offer support to others who may need someone willing to listen.
FND Matters NI describes the condition as “relatively unheard of”, while also noting that it is “one of the most common causes of neurological symptoms”. The charity says FND is a genuine condition involving a problem with the way the brain and nervous system send and receive signals.
Unlike conditions such as multiple sclerosis and Parkinson’s, FND does not involve structural damage or disease. Instead, it is described as a functional problem, although symptoms can still be severe and disabling.
Different journeys to an FND diagnosis
Colleena said her symptoms began suddenly in August 2023. After experiencing a twitching eye, the right side of her face began twitching within an hour before she suffered a seizure and struggled to breathe.
She was taken to hospital and advised that the episode was “just stress”. Colleena said she did not believe she was experiencing more stress than anyone else in her position, and that the sudden physical symptoms themselves became her main source of worry.
Her health continued to deteriorate despite taking prescribed Diazepam. After another serious seizure several months later, she returned to hospital and insisted on being assessed by neurology. She was discharged with FND mentioned in her notes, but said she was not told about it at the time.
Emma’s symptoms began around two decades earlier. While travelling from Dungannon to Moy, the right side of her face became paralysed. She attended an out-of-hours service and was told it was Bell’s palsy, receiving medication for the facial paralysis.
When the problem returned, Emma was referred to neurology and told she had chronic migraines and hemicrania continua, described in the article as a serious and continuous migraine. During a later episode while travelling on a motorway, the left side of her body became paralysed and she was told it might have been a transient ischaemic attack, although that was never formally confirmed.
Seizures, pain and the impact of disbelief
Both women described experiencing functional seizures in which they may remain aware of their surroundings. At times they can walk and talk during an episode, while on other occasions they are completely overcome. Their seizures can last for hours and may happen repeatedly in one day.
Colleena said she has experienced about 40 seizures in a 24-hour period. During the interview, Emma suffered at least four sudden-onset seizures affecting her facial muscles. Her face contorted on the right side, restricting her ability to speak, followed by mild disorientation and confusion.
The women also described dystonia, limb weakness, severe pain, fatigue, brain fog and problems with memory and concentration. They stressed that symptoms can vary from person to person, even when experiences overlap.
They said FND is often misunderstood because seizures may involve movement or communication, while hospital tests can return negative results and pain cannot be seen or measured. They described the diagnosis as one of exclusion, meaning other conditions must be ruled out, with no single definitive test confirming FND.
Both women said symptoms are sometimes attributed to stress, anxiety or poor mental health. They accept that poor mental health can worsen symptoms, but believe it can also result from not being believed or listened to. They said people with FND can be accused of “faking” or of making symptoms up to claim Personal Independence Payment.
Colleena said she was initially viewed by medical professionals as a new mother who was not coping or was stressed. She also stopped sharing her experiences on TikTok after online trolls repeatedly accused her of “putting it on”.
Call for a Northern Ireland pathway and local network
The women said Northern Ireland has no clear pathway for diagnosing or treating FND. They said this leaves people on different treatment plans, or undiagnosed and untreated, while they praised medical professionals but criticised what they described as dismissive responses to new and recurring symptoms.
They want public attitudes to change and are asking for kindness, patience and respect rather than sympathy. They said people should not assume someone is well because they are having a better day, or question the use of a disabled parking space by someone displaying a Blue Badge. They stressed that many disabilities are unseen.
Colleena and Emma said their partners and families provide significant support and have had to adjust their lives to help them. They would like the NHS in Northern Ireland to create a clear pathway for FND diagnosis and treatment, but are currently focused on building a network where people affected by the condition can find an understanding and listening ear.
At least three other women in the County Armagh area have already been put in contact with them. Those women had hoped to share their experiences but were unable to attend because of symptom flare-ups. Anyone wishing to speak with Colleena and Emma can contact [email protected] to be put in touch directly.