Angie's life changed after being diagnosed with Functional Neurological Disorder (FND) and Non Epileptic Attack Disorder (NEAD). She shares her journey to raise awareness of invisible disabilities.
My name is Angie. Everything started in 1996 after a holiday in Sri Lanka where I was bitten by an unknown insect. When I got home I had to go into hospital. I had no power in my lower legs, a weak right arm, and sickness. I had endured six attempts by a doctor to complete a lumbar puncture, which caused further problems for me. The doctors didn’t know what was wrong with me, and asked me if I was genuinely ill! I had had an amazing holiday and could think of better places to be, so I was shocked to be asked.
I was discharged and assigned as an outpatient to neurology. After completing an EEG, a test that detects abnormalities in brain waves, they diagnosed me with Guillain-Barre Syndrome. This is an auto-immune condition that affects nerves outside of the brain and spinal cord. I recovered but continued to have bouts of weakness in my legs. By 2011, my legs had become weaker, but I was still managing normal life. However, one weekend I found a raised rash on my legs, had a high temperature, and the top part of my body was red like I had been sunburnt – but I had not been outside. I was rushed to hospital with the concern it may be meningitis. Thankfully, it was a viral infection, but my legs were struggling with weakness and I began to use walking sticks.
Shortly after, whilst out with my partner, I had extreme pain in my legs and back. We went straight home, but I started vomiting and shaking. This went from bad to worse, and my partner said I was shaking so much that it looked as though my body was being electrocuted. I was rushed into hospital once again where they stabilised me, then discharged me. I was referred to another neurologist where I had more blood tests and an EMG, a test to measure electrical activity produced by a nerve’s stimulation to a muscle. When I saw the neurologist, I was in a wheelchair and struggled to speak. He said “We know you’re ill, but we don’t know what it is. We will be discharging you”. I was very upset by this, so took the initiative to research other neurologists and got a referral with Dr Edwards at the UCHL. It was then that I was diagnosed with Functional Neurological Disorder (FND) and Non Epileptic Attack Disorder (NEAD). It was a relief to know what was wrong with me. But the challenge was still left to me to get the treatments, the help and support.
Since diagnosis, my life has changed dramatically. I was always outgoing, hardworking and loved to achieve things. I was athletic, went to the gym and trained in kickboxing. But overnight I couldn’t work anymore. I couldn’t drive. The hardest thing I had to do was hand in my driving licence. Getting my licence in the first place had been challenging – whilst taking my test I had a slipped disc in my back. My independence and big achievement was handed back to me because of the seizures I was now having daily. I have gone from loving to travel, and enjoy being out and about, to someone who has a limited time she can sit in any chair, wheelchair or armchair. To go out now I have to wait to see how I am, and judge whether it is a good or bad day. Then, I have to plan where I’m going and mindful of how far away it is, how I will get there and whether there will be access for my wheelchair. I now have a limited amount of energy, so I have to prioritise and have had to learn to pace myself.
Like a lot of disabled people, when I first heard about COVID-19, it scared me. I took the decision to self-isolate at the beginning of March 2020. Self-isolating and lockdowns really didn’t phase me – I think a lot of disabled people feel that we quite often have had to stay inside because of health or mobility. One thing I enjoyed was to sit at the window and watch the wildlife, that kept me calm and I never felt and stress or boredom.
It’s been very difficult to manage my conditions. I tried Neuro physio, but it actually aggravated my condition. But I manage my FND and NEAD with medication along with meditation, breathing exercises, connecting more with nature and wildlife through gardening, and caring for the wild birds. I have found this keeps me calm and helps keep seizures under control. Another part of my FND is that I have problems eating. My sensors don’t work properly. Sweet food tastes too sweet and savoury food either tastes of nothing or tastes strange. I don’t have any cravings for food, and have to eat bland foods in small amounts. But I am used to it now, and have learnt how to manage this symptom. I felt a grief for the person I used to be, and I thought my friends were disappearing so I saw a trauma therapist. This therapy really helped me. Having these conditions, I have always found very little help so I have had to learn to be my own support and it’s made me a stronger determined person.
I have had the opportunity to talk to the Brain & Spine Foundation Helpline nurses who have listened, supported and advised me. When you are dealing with conditions that are either misunderstood or dismissed by a lot of the medical profession, someone who takes the time to listen, and understands is huge and means so much. I wish friends realised that I am not a condition – I am Angie who doesn’t always want to be asked about my health. I just want to be me, to have a laugh and a chat. There have been times when I have been scared and in a lot of pain, and I’ve not wanted to hear the words “I don’t know what to say, I don’t know what to do”. I just want the comfort and care from them.
To someone at the beginning of an experience like mine, I would say never give up. If you don’t get help, then learn to research what you need, and who is best to help you. I would say if nothing comes to you, you have to find it! Learn to fight your corner, and don’t accept any disrespectful or dismissive comments about your condition. The comments you may hear are because of lack of information or education in this particular condition. Remember you are the expert in your condition, and you will learn how to manage it.
I want to make people more aware of disability, to make it happen and not just words that are said. Whether we have a visible or invisible disability, people have to become more aware. Why are we trapped in housing not suitable for us? And why can’t we still access places, or have social groups in places where we can have a coffee and a chat. I would love to see some change, where we can feel we belong in society to.