Jules, Yorkshire

I was a mature student in my 3rd year at University, successfully fulfilling a much cherished dream to study, when I first heard about functional neurological symptoms. Prior to this, I had suffered many years of neurological symptoms without a diagnosis. My symptoms were slowly increasing over the years, and continued to intensify at University. By the summer of my 2nd year, I was struggling significantly, so started medication. It was hoped that this would help with my pain and mobility issues, as well as ease the subsequent anxiety, which I associated with the lack of diagnosis, which was beginning to impact on my studies.

About half way through my 3rd year, after my second MRI, I was told that my neurological symptoms were “possibly functional”. I joined an online Functional Neurological Disorder (FND) group, and with my new knowledge and online support, believed I could complete my studies. However, my health was getting worse, particularly memory, concentration, and brain fog. I blamed the side effects of my medication for some of these. My ability to study became erratic, but having achieved marks of 68 and 70, I believed I could overcome my problems. I was wrong. I struggled to complete my assignments, failing to graduate with my friends and cohorts.

I was desperate to complete my Degree, but with no help locally, I paid to see a Neurologist in London. It was unbelievably reassuring to speak to someone who understood my functional symptoms, as well as the context of the diabetic diagnosis I received around the same time.

My last appeal to extend my studies was successful, but the process made my functional neurological symptoms worse. Meanwhile, medicating the diabetes was beginning to help me. This was not the end I had envisaged, or felt I deserved, but University had been as supportive as it could be.

I am proud of what I had achieved “under the circumstances”. I have been lucky compared to many with FND, and I have tried to remain positive knowing this. However, I am still hurt, angry and frustrated that my degree ended as it did. I have no doubt that earlier “informed support” from the medical profession could have led to a different outcome. It is this pathetic, pointless, loss of opportunity that I feel strongly about, and knowing that my experience is not unusual in the context of those with FND, has motivated me to tell my story.

My studies taught me a lot about welfare delivery and well-being, but FND illustrated in a very personal way, the inequalities that exist both nationally and internationally in health diagnosis and support, and how this subsequently impacts on a person’s well-being.

FND is a controversial diagnosis that appears to be going through a period of transition. It is believed that up to one in three patients who leave neurological clinics with a diagnosis, may have neurological functional symptoms. Despite this, FND remains poorly researched and understood by many across the medical profession, and patients are unduly suffering as a result. Many have symptoms which don’t fit comfortably in a “tick box” to access treatment or financial assistance, and many have to constantly fight for support to meet their individual needs. Yet, with the right support in place, it is possible for people with FND to experience significant improvement. A change in approach is beginning to happen here in the UK, giving hope to those with FND. However, raising awareness is key to this becoming accessible to all patients.

PLEASE can Doctors and Policy-makers in the UK, listen to the “voices” of people in the UK with FND? There are many of us desperate to be heard. We want to help with research, and we want to help with support networks. When able, we are a very proactive group of people.

Thank you.

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