This week's guest blog is from Naomi Cunningham-Dexter about how the process of being diagnosed with Dystonia, took a severe toll on her mental health. A very interesting and motivating read!
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Naomi Cunningham-Dexter is 38 years old and is a Health and Social Care Partner for a national charity developing mental health, learning disability, older people and health and wellbeing services. Naomi lives with the neurological condition called Dystonia, the third most common neurological disorder. This has an impact upon Naomi’s voice and neck with the brain not instructing the muscles to contract but to spasm. This results in severe pain and difficult at times in communicating. This has had a significant impact upon Naomi’s mental health and in this blog she explains the battle she has faced to get the support to enable her to accept and cope with this life changing incurable condition.
My Dystonia journey
Words and phrases people use to describe me; bubbly, beautiful, tenacious, passionate, intelligent, one in a million, quality and inspirational.
Words and phrases I would use to describe myself; misunderstood, conflicted, unpredictable and passionate.
There are two sides to every story and quite often two sides to every person. Mine started seven years ago when my world and ‘me’ changed, or ‘evolved’ as I would like to now call it.
The start of my journey
I enjoyed my job, workaholic was probably an understatement. I worked as a manager for a Housing Association in their ‘Care & Repair’ department, we made a real difference to lives. Bringing homes up to a decent standard, enabling patients to return from hospital and be reunited with families, and facilitating adaptations to enable people to stay in their homes; quite often with terminal conditions. I took incredible pride in my work and also had a significant determination to progress my career to Chief Executive level.
During my time with this organisation I experienced severe persistent sore throats, my doctor put me on antibiotics for nine months, my voice sounded permanently hoarse, I sounded nervous and I felt as if I was being strangled. I thought it was nothing more than a severe virus. As this progressed, my voice got quieter and continued to deteriorate. I was starting to get asked ‘do you have a sore throat?’, I could see people straining to hear me and when I was on the phone, I could hear the volume being turned up so people could hear me. One day I will never forget, I went to see a client and they kept repeating a comment ‘your voice sounds awful’. I was trying to help resolve an issue and all they focused on was my voice. My family told me how awful I sounded on a daily basis, my work colleagues would make daily comments about my ‘sore throat’ and gradually everyone’s attention stopped being on what fantastic work I was doing but on how I sounded.
This continued for nine months whilst my doctor tried various medication but eventually referred me to a specialist.
Phase two of the journey.
The first consultant I saw decided that it was poor ‘vocal hygiene’ and referred me to speech therapist who worked on my breathing and techniques to help my volume. Whilst this therapy was happening the situation was now starting to take its toll on my mental health. Losing your voice is losing your ability to communicate, although mine was not gone completely, when I spoke people found it hard to hear me. The word ‘pardon’ became my nemesis and filled me with panic that someone hadn’t heard me. How can I do the job that I was doing with a voice like mine? How can I instil confidence in others when I don’t have it in myself? I sounded quite frankly awful and I was starting to lose the one thing which defines us all, my voice, my way of communicating and my identity. I recorded myself once and listened to what I sounded like, this resorted me to tears as the reality of what was happening and how I sounded hit me, it hit me hard. There was nothing I could do to stop it and no answers as to why.
Looking back now, this is when I started to change. I became quiet, withdrawn, lost my confidence, stopped socialising, avoided conversations, I questioned my ability to do my job and I felt alone. No one could really understand how I felt and the only comments I got (or at least remembered) were all negative about my voice.
Every time I went for speech therapy, they asked me to rate my mood on a scale of 1 – 10, 10 being the worst, I was always an 11+. I cried every time I went to see them, even they did not understand the emotional and psychological impact. I kept going though and carried on at work with the façade that I just had a ‘sore throat’ and just nodded at the negative comments saying ‘it’ll get better soon’, knowing full well that my life had now changed forever.
After nine months of speech therapy and deterioration of my voice, with the additional element of what I referred to as a ‘stutter’ which I now know as ‘voice breaks’, I decided to pay privately and see an ENT specialist. He thought it might be a significant reflux problem so referred me as an emergency case into his NHS clinic. Within two weeks I had an endoscopy which confirmed reflux and a rolling hiatus hernia. I finally thought I had the answer…….things will start to get better! I started on a course of new medication and was referred to a new speech therapist. Two months into the medication there was no change at all and in fact, things were still deteriorating. I saw the new speech therapist and after having half an hour with her, she said to me ‘you have spasmodic dystonia (SD)’. Now, I had heard of this condition and had asked whether I could have this to be told that I was too young at only 32 and my voice wasn’t typical of an ‘SD’ voice.
This was an absolute ‘Eureka’ moment for me. Finally someone agreed that I had this condition. I was referred to a voice consultant, this was now two years after initial symptoms. My mental health at rock bottom, my confidence and self-esteem at rock bottom, starting to question my ability as a parent and as a person. I cried a lot, daily, I would cry myself to sleep. I would question why do I have to have this condition. Everything was so positive and was good two years ago. What’s the point in going on if I am going to have this condition forever? I would wish for someone to take my arm away over my voice. Work was tough, meetings difficult, holding team meetings a challenge, talking to commissioners even harder. The worst being ANY situation with background noise, with SD you can’t physically raise your voice to be heard over others. You can never underestimate the impact of losing the way you communicate; you probably can’t appreciate it unless it has happened to you. The other massive impact were the comments from others………all negative. Every conversation I seemed to have were negative and all revolved around my voice; how bad I sound, have you got a sore throat again, you feeling ill again, what’s wrong with you, you sound awful, pardon (that dreaded word). Maybe it was just my state of mind but there was nothing positive, or nothing which I could see that was positive.
I saw a voice specialist three years after initial symptoms who did not agree it was SD but offered me a treatment option of Botox into my vocal cords which might help. Even better, this could be done the next day. I absolutely jumped at the chance to try anything. Within 24 hours my voice was back to ‘normal’. It worked!! Cue happy Naomi again, I was fixed, cured, everything would be back to how it was.
Here comes phase three
Probably the most difficult, most challenging part of the journey. Botox worked and it worked well but gradually my voice deteriorated back to how it was. I also had a neck ‘shake’ and it started pull
to the left. I had had this neck thing for a while but always just thought it was a muscle issue and it caused me no real issues. I’m quite lucky that I have long hair so could hold on tight to keep it under control!!
The voice got worse and the head started to shake, but during this time I actually managed to get myself a new job. So I couldn’t be that bad surely? It felt like things were on the up even though the voice was on the down! I took great positivity from my new role. After a couple of months in my new role my voice deteriorated significantly. My employers were less than supportive and restructured the management team and made my role redundant. I maintain, and always will that this was partly due to my condition. My consultant was experimenting with levels of Botox and whether to put it in the front or side of my neck, they were still not convinced it was SD. I now found myself jobless and being experimented on. I went for jobs and can’t even remember the number of interviews I had. Every time I was questioned about my voice and my ability to do the job……even though I HAD done the job and was more than capable. Not having a job, no purpose again drove down my mental health to all new depths. I really didn’t want to be here; I didn’t see a point in being here. No one understood, no one tried to understand. No one else I knew had this health condition. I was completely alone and saw no way out. I threw myself into trying to get work but with every rejection I travelled a bit further down the depression spiral.
I kept seeing my consultant who kept experimenting, they decided to go back to the original method of injecting when it had worked but to inject more Botox, it worked! Miracle number two! And the day after I had Botox my voice was PERFECT and I had a job interview. I performed exceptionally well in the interview and was offered the job on the same day.
I really enjoyed my new challenge and being employed again but treatment was still hit and miss. It felt like a vicious cycle, I would have Botox which might or might not work, my voice would start to deteriorate and my mental health would go with it. My consultant was reluctant to inject me with Botox as they felt that I didn’t have SD so they wanted to go as long as possible between injections. This made my job virtually impossible. Again I had comments about my voice, work was stressful and things quickly began to spiral out of my absolute control. On top of this, my best friend and who can only be described as my rock committed suicide. This triggered a guilt inside me which will live with me forever. Someone who had tried so hard to help, understand and reassure me yet I couldn’t do the same for them.
This was the start of the final chapter of this journey.
I absolutely hit rock bottom, this could have been a combination of things but I felt I had finally lost control of everything. My consultant was making decisions on my behalf and not understanding the impact, I lost my best friend, I was struggling at work, I felt worthless, useless……..what was the point? I was an awful parent, a bad friend, no good at my job and I felt like complete loser. At this point I sat with a cocktail of drugs in front of me thinking about my next move. I had managed to stockpile a lot of medication which I know would be my way out of this. It would all be over and I would be free from all of the pain, suffering and lets face it, the world wouldn’t lose much. I had been asked previously to rate my mood on a scale, which I always answered truthfully and it was quite obvious that I was struggling, yet no one had ever asked me how ‘I’ was, the condition rather than the person always being the focus. So this was it, a choice of live or die.
At this point I called my GP practice and said I need to see a doctor urgently. I got an immediate appointment which quite simply saved my life. The GP I saw took the time to listen. I cried, she listened. She had never heard of my condition and researched it whilst I was with her so she could
understand. We discussed how my dystonia had impacted me emotionally and recognised the scary dark hole I was in. This was a massive turning point, MASSIVE! This doctor I owe my eternal gratitude to. We discussed my treatment plan with the specialist and why decisions were being taken not to inject me when I needed it, we discussed a referral for cognitive behaviour therapy (CBT) and we discussed medication to help me with pain (which would also help me emotionally). I spent about 40 minutes with the doctor, time was not an issue, I was given time to talk and between us we agreed a plan. I finally felt like someone had listened to ME. This doctor now became my voice and my advocate.
After this appointment, this started to give me the gradual confidence to question the treatment I was receiving. I actually had a discussion with my consultant about my Botox treatment plan, me telling them what I wanted. I ensured that I pointed out how this had had a significant emotional impact. I went for CBT which helped me rationalise my thoughts, I questioned my medication which lead to a referral to a neurologist, something I had always asked for and been refused. I was finally able to start to take back control of my life.
My neurologist conducted a number of tests which included looking at other causes of my condition including MS, Parkinson’s and Wilsons disease. I was subsequently referred to the dystonia specialist regarding my neck, the specialist questioned why I had not been referred sooner as my neck dystonia was ‘severe’. My dystonia is now classed as generalised.
Now, seven years down the line I can look back with hindsight and be grateful for my journey. There are several learning experiences I share with those living with dystonia. I am an active peer supporter and would like to think of myself as a peer educator. It genuinely worries me that I see so many living with long term and life changing health conditions which are having a significant impact on their mental health which is not being recognised. Once a patient is passed on to a consultant, it is unusual for the GP to then be involved. If this is the case, the consultant should surely be considering the psychological wellbeing of ANYONE diagnosed with a long term or life changing health condition as a standard part of their treatment plan?
I will always be living with a physical and mental illness but I am determined that parity of esteem is realised.
Today my priorities have changed. I no longer want to get as high as I can in my career. Through my job as Health and Social Care Partner and my ‘living’ experience, I simply wish to educate, advocate and change lives. I want to make a difference and I want people to learn from my experience. I am passionate, I am tenacious, I am determined but more than anything I am a survivor. I will always be someone with ‘living’ experience but it will not beat me. I live on to help others on their journey as proof that against all the odds, even when you have been diagnosed with a life changing condition, you can use it to evolved. It has taken me six years to come to terms with my condition and to almost grieve the loss of the person that I once was, but I believe with a passion that through the changing of pathways for dystonia, raising the profile of peer support and offering the psychological support to those living with life changing conditions, others will be given hope, lives will be enhanced and lives will be saved.
I have now set up my own Community Interest Company and intend to use my experience and networks to help others who are struggling with dystonia, this will include online counselling support for those I see on a daily basis who are in crisis and not offered any psychological support. Hopefully this will enable them to talk online to a professional in the interim period during their wait for CBT.