Ever since she was a youngster, Jeanette Bramald (52) always wanted to be a doctor. As she grew up, she changed her mind and longed to become a psychologist, but it was only when she was in her 40s that she completed a degree in criminology and psychology.
But she had a very definite reason for those early career aspirations: “I wanted to know what was wrong with my own body. I thought, if nobody can give me the answer, I’ll go and get a wee look myself.”
And after a lifetime of being told her endless symptoms were all in her head, six years ago Jeanette was finally diagnosed with Functional Neurological Disorder or FND, a condition in which the signals between the brain and the nervous system are disrupted, producing a wide variety of possible symptoms from limb tremors to blacking out and from blurred vision to difficulty swallowing.
In Jeanette’s case, she says she has always been sick, suffering with pain in her legs, difficulty walking and many other symptoms.
“My mum had been back and forward to doctors, but they would say she was one of those parents that got too uptight and paranoid. She was always back and forward to doctors because there was always something just wrong,” Jeanette says.
“When I became a teenager, it became apparent because I was taking something called ‘drop attacks’. It’s like a seizure.
“The teachers would have said to my mum that I was ignoring them, when I was going into this wee stupor, and then I would have taken a seizure and dropped and then come round again. This always happened and I was constantly being ill and in pain. I’ve been under a neurologist from about the age of 16 or 17, just back and forward, back and forward.”
After a lifetime of being told it was all in her head, Jeanette was finally diagnosed six years ago.
I was delighted with the diagnosis.You need a label sometimes to understand
“I’d been attending the TIA clinic for about 12 years, because I would have taken stroke-like symptoms,” she says.
“Up until then I’d been in and out of hospital all my life, for physical and psychological reasons. I went to see a psychologist because some of the doctors suggested that it might all be in my head. But the psychologist said ‘no, I can’t find anything’.
“It wasn’t until I took another functional stroke that I was diagnosed. I was taken into the Royal and this doctor had just undergone training from Professor Jon Stone in Scotland and he recognised it straight away.”
Very little is known about FND, Jeanette explains — and that’s why she is throwing all her efforts into raising awareness about the condition by joining forces with her mum Freda Carson to set up FND Matters NI. She started off with a Facebook page where people with the condition could find out more and know that they weren’t alone.
“I couldn’t find anything. So I’m fighting for things to be put in place for people rather than having to search and search,” she says. “I don’t want young people to go through their whole life, back and forward, and not getting this support. If this support is put in place straight away, the outcome to managing this condition is much better.
“I was delighted with the diagnosis. Sometimes people will say, ‘why do you need a label?’, but you need a label sometimes to understand.”
Jeanette was constantly ill at school. As a child she went to Nettlefield PS, and then Orangefield High School, but feels no one quite knew what to do with her.
“I kept going into this wee world of my own and I think people just sort of left me there — it was less hard work,” she says.
When she was a teenager, the family moved to England and after leaving school, Jeanette joined a job training programme.
“I went to college and it was catering — I loved it, I really did — and then I was a trainee cook at a nursery for underprivileged children. But I was still taking the seizures and I was always sick — sore throats, pains in my legs, my stomach, my back, constantly down with colds and always ill. I thought it must be something I am doing because I’m always sick.
“One day I’ll say ‘I’m okay’ and I’ll organise something and just before it, I’m sick again. And it was like ‘you’re always sick, can you not do something about it?’ You do become immune to that, but it’s not until you sit down and start to think about how people’s attitudes have been... I got on with it. Another one I used to get was ‘Well, you look all right’. Just come into my head for a couple of minutes and you’ll soon see.”
Jeanette says the condition is caused by disruption of the messages being sent between the nervous system and the brain.
“Whatever message the brain is sending to the nervous system, it’s just not being picked up, and the messages from your nervous system are getting mixed up and not being given proper information,” she says.
“This is the problem — you can have over 100 symptoms. It’s the number of different symptoms that cause the problems with diagnosis. You can present with pain in your legs and by the time the doctor is seeing you, it’s pain in the chest. It confuses me, never mind the doctors — it’s not an easy condition to diagnose.”
The doctors were saying to my family ‘There nothing wrong, she just needs to shake herself'
Jeanette says she has experienced a lot of negativity from doctors throughout her life, and her mum Freda (73) agrees.
She explains: “When Jeanette was 14 or 15 and I first noticed the symptoms, she was going into little dream-like trances. Now we know it was non-epileptic attack disorder which is common in FND. We are talking 35 or 40 years ago and she was treated at that stage for epilepsy.
“They said it was in her head and it was behavioural problems more than anything. Thankfully we’ve moved on since then.”
But Freda says she always knew there was something different about Jeanette.
“When the doctors keep telling you there’s nothing wrong with her, you don’t necessarily agree with them, but you do wonder. It was very difficult actually,” she says.
“Doctors were continually telling me there was nothing wrong with her. It was a relief when she finally got a diagnosis of FND because then you could start dealing with it and this is exactly what she has been doing since she got her diagnosis.
“She’s been brilliant, reading up about it and torturing various doctors and professors. Now she’s got to the stage, which is absolutely brilliant, where she’s trying to pass on her knowledge to other people in the same position. She doesn’t want other children to go through what she’s been through, being told it’s in your head — she wants to prevent that from happening again.
“However, there is not an actual cure, just ways of managing FND. At the minute we need more research.”
Jeanette is married to Steven (58), whom she first met when she was 18. He’s a retired steel erector, who put up the chimneys at Ballylumford Power station in Co Antrim.
“In all those years, I’ve never watched him work — I couldn’t! I can just about go up the stairs without feeling sick,” Jeanette laughs.
The couple have a daughter, Lois, and two grandchildren, Leon (11) and Honour (6).
Jeanette admits her condition has made it impossible to forge a career or keep a job in the long-term, and as a result she has gravitated towards community and voluntary roles.
“It has always been my condition that has stopped me in my tracks from working. I would have had two or three-year windows when I would have been able to do something, but I would have got knocked down again with a relapse,” she says.
To highlight the lack of awareness, we set up a Facebook page
Jeanette says a relapse might have lasted at least a year and then she would have got back on top of her condition again.
“I’d have wanted to go out and work again,” she says. “But I’d get a job and in a couple of years a relapse would come on and I’d have collapsed and been back in hospital, usually with no warning.
“As I got older, I knew I only had a short window and I knew I had to rethink things about going out to work.” The condition also inevitably had an impact on family life.
“It was difficult for everyone to see me constantly ill and it was harder when I was younger. It was very difficult because the doctors were saying to my family ‘There nothing wrong, she just needs to shake herself’.
“If I thought giving myself a shake would work, I’d be shaking myself all the time. That is why I am so motivated to raise awareness of this condition.”
Even after being diagnosed, she still found herself meeting with scepticism from those who were supposed to help her — and that’s why she decided to set up the Facebook page.
“What we are doing is raising awareness of this condition first of all, because awareness is very low in Northern Ireland and there are no specialist services,” Jeanette says.
“To be honest when I was diagnosed six years ago I went to my own doctor’s surgery and asked if they could help me. And they said ‘It’s all in your head, it’s obvious you have a problem with it’.
“So I went and spoke to the consultant and he wrote a letter to the GP surgery that said their attitude is terrible. But my consultant did say it’s very early days and there is still a lot of negativity and it’s about trying to explain to people, rather than getting annoyed.
“So I said to my mum, I’ve been doing so much talking to all these professionals but we need to take it one step further and I can’t do it on my own. So my mum said she would help.
“We contacted doctors and to highlight the lack of awareness, we set up a Facebook page and we went from there and started to get people to talk to us.”
Last March, they self-financed their very first event with FND Matters NI, but now they’re able to do more after receiving lottery funding.
“We felt over the moon because we felt we can really do something for these people,” Jeanette says.
Now they’re able to hold regular drop-in events and publish awareness-raising leaflets on FND and are even holding an FND Neurology Conference at the Lansdowne Hotel in Belfast with updates on research from Dr Ingrid Hoeritzauer and Dr Nigel Lyttle. Anyone is invited to come along if they are interested.
The main thing for Jeanette, though, is to let sufferers know there are other people in the same boat.
“They don’t have to feel isolated, they don’t have to feel like they are on their own. I’m saying I understand what you are going through and how difficult it is,” she says.
“It’s not just the condition that makes it difficult: it’s the outside world as well. It’s like a dirty secret. I found people saying ‘I don’t even want to tell people because I am so embarrassed’.”
FND Matters NI’s Neurology conference is tomorrow, from 10.30am-3pm in the Landsdowne Hotel, Belfast. To register email email@example.com or tel: 0759 692 6683. To find out more about FND Matters NI, visit https://fndmattersni.org.uk or visit the Facebook page for FND Matters NI