LYNNE Edwards was happy with her life. At 21 she had a job she enjoyed as a customer service assistant for South West Trains, a voluntary role with the Scouts that she felt passionate about, and hobbies to fill her spare time. One of favourite pastimes was to jump on a train and travel somewhere new, going for the journey rather than the destination. She loved spontaneity.
Today, at 24, her life could hardly be more different. She lives in a Hampshire care home, requires a winch and help to get in and out of bed and a motorised wheelchair to get around. The care home is in a fairly rural location in Fareham and she feels cut off from her former life – she can’t pop to the shops or to a restaurant and spends her days passing the time in her room doing various craft activities.
And frustratingly, she doesn’t really know why this has happened.
At 21 she started getting headaches and blacking out in the street and at work. She was taken to hospital a number of times but tests didn’t reveal anything wrong with her.
With her headaches becoming increasingly crippling she was sent for an MRI scan but again nothing appeared to be wrong and she was told she must have a functional neurological disorder (FND).
FND sufferers experience medically unexplained neurological conditions, including uncontrollable movements, paralysis, pain and problems with balance. Unlike structural neurological conditions, such as Parkinson’s Disease, the symptoms are not caused by disease of or damage to the nervous system and no other physical reason can explain them.
This makes the condition difficult to treat and in Lynne’s experience, can result in a lack of sympathy and understanding.
“They said ‘it’s all about what you’re thinking – you need to change how you think and you’ll be fine’,” says Lynne.
“It was like ‘that’s your diagnosis, you’ll be fine if you change your thinking’ but I wasn’t told how to do that.”
Unfortunately, rather than improving, Lynne’s symptoms then took a dramatic turn for the worse.
“I was in McDonalds and I blacked out. I hit the deck and when I came round I couldn’t move my legs,” says Lynne.
“I was completely paralysed from the waist down. It was really scary.”
Lynne then stayed in hospital for several months where she received regular physiotherapy but her condition did not improve.
“I was getting physiotherapy and they were like ‘there’s no reason why your muscles aren’t moving,’ and I said ‘there may be no reason why, but they aren’t moving’. It was like they didn’t believe that I was trying to focus on moving but I was – you can’t prove you’re trying to focus on moving when it’s not working.”
Lynne couldn’t go back and live in the house she shared with a flatmate. Initially she was moved to a flat, then to a palliative care unit and then to a mental hospital unit, before being transferred to the care home where she now lives in December 2012.
“I don’t get physiotherapy anymore and I haven’t had any counselling or anything like that,” says Lynne.
“I don’t really like being here. I’m sat out in the middle of nowhere. I can’t have a normal life. At least before I could go to the pub or the shops. Here I can’t get out really. I kind of feel that this is the end of it. I feel like they have given up on me, like I’ve been dumped.”
Lynne feels that there is a lot of misunderstanding about the condition. Psychoanalysts used to refer to it as a ‘hysterical’ condition and until recently it was better known as a conversion disorder, which it is still sometimes known as, suggesting that sufferers had unwittingly turned a mental disorder into physical symptoms.
“I don’t subscribe to the idea of it being a mental trauma being expressed as physical symptoms,” she says.
“I didn’t suffer a mental trauma. Some people say it could be down to a physical trauma, like an operation. I had an operation under general anaesthetic to remove some teeth but that was after the headaches had started. That’s the only thing I can think of.”
Lynne’s greatest hope now is that she will be referred to the National Hospital for Neurology and Neurosurgery in London, which offers specialist treatment for FND sufferers.
“I’d love to be able to live a normal life,” says Lynne, who adds that she feels very bored.
“I’m cut off from the world. I’d like to get out and see places, I’d like to have a relationship. I don’t see my old friends anymore but my family come and visit.
“Some people think you’re faking this or that if you cheer up you’ll be fine,” she says.
“Four years of my life have been wasted. You don’t say ‘I want to live in a care home with no future and no contact with anyone’.
“I don’t think anyone would choose to live like this.”