There is a stigma and fear that surrounds being diagnosed with relatively unheard of diseases. The feeling of being one of only a handful to suffer through an illness is bad enough without having to contend with a lack of knowledge on the subject or a misdiagnosis from healthcare professionals.
This is what Donegal-native Sonya Murphy had to deal with before being diagnosed with encephalitis, a condition where the immune system attacks the brain, and which, if left untreated, can kill.
Murphy was not feeling the best in the run-up to her wedding day. She was suffering from vertigo, anxiety and severe migraines, which her doctor put down to wedding day stress. At one stage, she had visited her doctor five times in one week, worried for her physical and mental health.
“Everybody was really worried about me, but they may have thought that I was just really hyper since I was getting married. They weren’t sure. They also thought it might have been to do with the medication,” she says.
Her wedding was a small and intimate affair, where she and her husband Ronan were surrounded by close friends and family. During the meal, Murphy’s illness reached a new level and she began to have a seizure. An ambulance was called and she was brought straight from her wedding reception to St James’s Hospital, Dublin, with her husband by her side.
“I can’t remember what happened in James’s. All I remember is trying to rip my wedding dress off. I just don’t remember,” she says.
After hours in the waiting room, her husband was told to go home to sleep by his wife’s relatives. When he woke up, he was informed that his new wife had been brought to a psychiatric hospital overnight. “I was quite angry. No one had talked to me at any stage. My first step was to make sure that she was okay. It was getting quite serious,” he says.
Psychiatric hospital
Murphy was held in the psychiatric hospital for 10 days while doctors struggled to find out what was wrong with her. Although she lapsed in and out of lucidity and cannot remember long periods of time, she says what happened there still causes nightmares.
“I have some memories of being brought by ambulance from hospital to hospital. Then I remember being locked up. I have a lot of horrible flashbacks. I still get terrible nightmares about what happened in the psychiatric hospital. It was quite horrific,” she says.
“I was locked in a cell. [Encephalitis] causes you to try to hurt yourself and to throw yourself against walls. You’re smashing your head against the walls and against the floor. It’s not something that you normally do. It’s pretty horrific.”
After her stay in the hospital, Murphy was brought to another Dublin hospital for extended tests to find out what was wrong, but would not receive a correct diagnosis until she was brought to St Brigid's Ward in Beaumont Hospital.
In Beaumont, Murphy received injections into the spine to see if there were antibodies present that would indicate she had encephalitis.
Following aggressive treatment, Murphy’s memory began to return, but she cannot remember the previous two months. She also had to learn how to talk, walk, read and eat again. “I know Ronan used to come and play music and read to me. My family and daughter visited, but you’re just there in a coma,” she says.
From there, Murphy spent two weeks in the National Rehabilitation Hospital in Dún Laoghaire before returning home. However, symptoms of encephalitis returned and Murphy had to return to Beaumont, where she stayed from May until September 2012. She has no memory of this visit.
Heavy drug cocktail
Murphy remains on a heavy cocktail of drugs, which she will be on for a long time, but she is recovering well. She is doing a lot of work with Acquired Brain Injury Ireland. She also paid tribute to the work done by Dr Norman Delanty and the team in Beaumont Hospital.
“I’m trying to get fit, which is something that I have to do. I’m trying to eat proper food and get enough sleep. I’m trying to be as positive as possible and get ready to get back to work and be there for my husband and my daughter,” she says.
"I have been through a horrific experience and I have come through it. It has been surreal, but I'm lucky that I have my husband and my daughter. I'm very determined."
Things are changing
Now, things are changing for people who suffer from encephalitis in Ireland. Niamh Cahill was diagnosed with encephalitis in 2008 and although things have been very difficult, she says it could have been an awful lot worse.
“I wasn’t brought to a psychiatric hospital, but I was put on life support for seven days. If I was put in a psychiatric hospital, I don’t think I would be here now and if I was, I wouldn’t be able to do what I’m doing now,” she says.
Cahill is still on medication and occasionally needs IV therapy, but is recovering well following a period of violent seizures. She is currently studying for her Master’s from the Mater Dei Institute.
“I’m happy I got my degree and I’m happy I’m doing my Master’s, but I don’t think I’m the average 23 year old, especially when it comes to my energy levels.
“I’m very content now. It’s been a valuable learning curve and if you don’t take it like it is, you could spend your life ripping out your hair and thinking ‘why me?’ Everything I do now is an achievement, because it might not have been possible.”
