Written by Julie Nevin | Clinical Nurse Specialist in Palliative Care, BSc (Hons) King’s College London, London, UK
Spasmodic dysphonia (SD) is a rare neurological condition and diagnosis is often missed, which can potentially cause immense suffering for patients, both physically and mentally. The physical aspects of the condition are unique for everyone. In my experience, attempting to speak over spasms and in higher pitches leads to all-consuming exhaustion. We should be able to speak as we breathe: without effort or thought. However, those who suffer with SD are forced to ‘think’ and make a huge amount of effort with their speech on a daily basis.
According to the National Spasmodic Dysphonia Society (NSDS),1 dystonia is the 3rd most common movement disorder, behind Parkinson’s disease and essential tremor; however, support groups are virtual. Dystonia is a generalised movement disorder that can affect any part of the body, including the vocal cords. The National Institute on Deafness and Other Communication Disorders (NIDCD),2 suggested SD affects 2 in 1 million people, which may well clarify why support is limited. There are no coffee mornings or regular meetings, so people with the disease need to be proactive and find groups via Facebook, Twitter, and local charities, which can be difficult to access. The Dystonia Society UK is a registered charity that offers phone support and literature. However, if you cannot speak on the phone, which occurs in extreme cases, this may be futile. The impact on mental health, in my opinion, is overlooked. I have defined SD in a prior article; however, the effect on mental wellbeing and how it makes us feel needs to be further explored.
The inability to use your voice leaves you feeling inferior and extremely embarrassed. The onset of SD is spontaneous, which I compare to being hit by a sledge hammer, in that you have no understanding of what is happening. It is forceful, overpowering, and frightening. For me, this slowly affected relationships over a period of time. I would dodge answering the phone, I withdrew from speaking in meetings, and I avoided social situations in noisy environments. The biggest impact on my wellbeing was hiding my speech difficulties from friends and work colleagues.
Our voice is the first impression people have. We can present ourselves as in control, authoritative, compassionate, funny, serious, or confident; the list is endless. However, with SD, you often present as nervous, less intelligent, and lacking in confidence. I know this because I have experienced it first-hand. There were many negative connotations for me. I felt like I was losing control of who I was, but I could not bring myself to talk to those closest to me, for fear of being judged.
When I was finally diagnosed, the perception was that after my injection all would be well. However, although complications from a Botox injection are not the same for everyone, it can leave you with a breathy voice for several weeks. The implications are therefore challenging, as you cannot project your voice or speak for long periods.
The effect on relationships can be significant, as there are only so many times you can tell people you are having speech difficulties. People are human and they forget. Some get bored listening, whilst others don’t fully understand.
For me, home life is very precious and I choose not to speak about it too much, because I do not want to live in a SD bubble and weigh others down with my frustration. I keep things to myself more and make light of my condition, even when I feel upset. Work is also a big part of my life, and I am there 5 days a week. I cannot bring my SD to work as an excuse not to fulfil my role. I am lucky in that I have 100% support, but I still feel that I need to push myself, even when it is an effort. Subsequently, despite treatment and periods of respite, SD is always on my mind, but I feel I cannot impose my thoughts on to others.
Friends understand my condition because I have explained it. Despite this, I still have doubting thoughts: ‘Am I as much fun as I used to be?’, ‘People may stop inviting me out if I keep cancelling’, ‘I’m due an injection, so I can’t see people for a few weeks as my voice will be breathy’. These are real and valid concerns that affect my relationships, as at times I cannot speak on the phone.
SD is a chronic condition managed with Botox, but it is not a permanent solution. The results of treatments vary and you never quite know how long they will last, so there is always a fear of losing your voice. I have chosen to be proactive in finding virtual support groups on Facebook and Twitter, where I can interact with others who understand the condition. Despite my friends being around me, I find myself increasingly reliant on my ‘virtual’ friends. Although accessing online support helps, it does at times feel isolating, as you cannot converse in real terms. We are bombarded with support group advertisements for all sorts of medical conditions but SD is nowhere to be seen. This may suggest that there are people in the UK and beyond who could feel isolated and thus withdraw from wider society.
My vision is to set up a charity and campaign for further research. This is an area that is underfunded and SD is misunderstood by many doctors as being a psychological condition. We cannot use our condition as an excuse to dodge situations or miss work days. However, we have the right to expect that SD is a recognised condition and that people are aware of the challenges we face. SD needs a voice and I intend to give it a loud and clear one.
- National Spasmodic Dysphonia Association. Available at: https://www.dysphonia.org/. Last accessed: 21 September 2017.
- National Institutes of Health. National Institute on Deafness and other Communication Disorders. 2017. Available at: https://www.nih.gov/about-nih/what-we-do/nih-almanac/national-institute-deafness-other-communication-disorders-nidcd.Last accessed: 21 September 2017.