You might struggle to
understand or even be interested in the medical jargon that makes up this blog
title. Spasmodic Dysphonia is a rare neurological condition which causes the
vocal chords to operate in a dysfunctional way thus affecting voice quality. A
vicious circle develops with secondary problems involving confidence and stress
and the worst thing is that you can’t talk about it because you can’t speak
properly. Another issue is that nobody else seems to be able to understand that
this is not simply a psychological problem and there is no clear solution.
I was 22 and on a summer break
after my 2nd year at university. I was overweight and on an
intensive regime to get into shape before the start of the 3rd year.
As well as the strict diet, I was out running every day. I have mild asthma and
at that time I started taking a Becotide inhaler which is used as a preventer,
as well as the usual Ventolin inhaler. At that age I also carried around quite
a lot of stress for one reason or another. I was still growing up and figuring
out who I was in my own weird way. I gradually started to notice a change in my
voice quality, becoming weaker and strained. I didn’t seem to be able to
control it and I put it down to a sore throat from all the heavy breathing
whilst running and the new inhaler. But the problem got worse and worse and I
got to the point where I was a bit worried because it didn’t feel like a normal
sore throat and I had a feeling something odd was happening.
The doctor diagnosed a simple voice strain and I ended up
going for speech therapy sessions at the hospital. This was quite difficult to
accept because I had to admit to myself that this comes across as a weakness in
my character. The way you talk is an important part of who you are and if you
can’t speak well, it’s a disability. I wanted the therapy as I was hoping this would
be the solution to get back to normal as soon as possible. I was very anxious
not knowing what was going on and what was causing this. As part of the therapy
all I had to do was read out the vowels and I couldn’t even do that properly. My
voice would always scrunch up and a higher pitch strained sound would come out.
When your voice is failing every time, you develop a feeling of stress and
irritation in the pit of your stomach every time you try to speak, so this
fuels the problem and the whole thing becomes a self-fulfilling prophecy. That
cycle is very difficult to break. I was taught various breathing/relaxation
techniques and ways to soften the onset of words and I had to go back to
university to try to implement these methods.
I used to read books out loud to myself. I got through
most of Stephen King’s “The Dark Half” but still wasn’t really noticing any
improvement. My uni friends would hear me reading to myself in the house and
make funny comments so I had to be open about the problem and just go along
with the joke. But it’s not a joke being in your 3rd year and
carrying this huge stress about not being able to talk properly. Apart from the
social life, you have to do presentations and group discussions which count
towards your final mark. You learn to duck out of certain social situations
where you know your voice will fail, but you can’t opt out of the presentations
so you have to make your apologies about “having a sore throat at the moment”
and get through it as best you can. It may be hard for anyone to identify with
how this feels, but it was a very traumatic time for me. I became very shy and
lost a lot of confidence. I had a lot to say but wasn’t able to get the words
out so I just had to keep my thoughts to myself and not contribute properly to
discussions with friends or class mates. Every time I spoke it would be awkward
because there would be pauses, straining, stuttering and I would end up losing
track of what I was saying, so the conversation would go on without me. I felt
very helpless and pathetic. People must have either thought I was messing about
or that it was just a temporary problem, but after a few weeks and months of
this, I knew that these same people must be realising it’s not a temporary
problem after all. It’s embarrassing and not the sort of thing people want to
ask about. I didn’t want them to anyway as I couldn’t speak properly to tell
them and I was still trying to deny it was happening. All of this stress and
embarrassment and not being able to discuss it with anyone is pretty miserable
and frustrating. I definitely cannot say I have ever been a sensible or normal
person, but I guess my behaviour might have seemed quite odd or antisocial. I just
had to deal with that stigma as I couldn’t do anything about it. I constantly
told myself it won’t always be like this and there will be a time when I can
show everyone I’m normal after all.
I developed various coping strategies to try to reduce
stress in my throat or cover up the problem. I found myself planning everything
I was going to say and the way I would say it. Sometimes I would change words mid-sentence
because I knew it was going to get stuck. I started breathing into each
sentence or adding a ‘h’ where there shouldn’t be one. I started saying ‘errr’
at the beginning of each sentence as this got the initial strain out of the way
and the rest of the sentence could flow better. I started to think of a daft
way to say everything so I could add a laugh to my sentence as this reduced the
tension. I wasn’t communicating how I naturally would, so after doing these
things for a while, I realised my personality is actually becoming distorted to
fit this condition. I became friendlier with alcohol as this would help to
reduce the tension and allow me to speak a lot more clearly and strongly, but
it took at least 6 pints and by that time I wouldn’t make much sense anyway. I
tried other drugs such as ecstasy (you have to do these things when you’re a
student) and the problem would completely disappear… in fact I used to forget
the problem even existed and that was a huge relief, although only temporary.
The voice problem would always return the next day along with the usual mental
torture I always get from drug and alcohol hangovers.
At some point you have to admit that all these coping
strategies are not helping the problem overall. During my 4th year
at uni, I can’t remember exactly when it was or how it came about, but I was
referred to a specialist who happened to be at Nottingham where I was studying.
They confirmed that I am suffering from ‘Adductor Spasmodic Dysphonia’ which is
where the muscles that control your vocal chords will automatically constrict
when you start to speak. There is another ‘abductor’ form of the condition
where your vocal chords will pull apart and no sound will come out, which I
imagine would be even worse. The specialist told me this is a very rare
condition affecting between 1 and 4 in 100,000 people. I was always angry about
why I had to be one of those unlucky ones. He also said I would never be rid of
it but I instantly rejected that and still do. He asked me if I would like to
try a new treatment involving botox injections and even though it sounded
insane I agreed to try it without hesitation.
On my first day of treatment, I turned up at the
hospital, nervous but also very relieved to be getting specialist help. I had
to wait in a corridor with other people who were here for the same treatment.
It’s the shyest I ever felt in my life as I just had this feeling that these
people have the same shameful problem like me and there is nowhere to hide.
They must understand all my stress and frustration but at the same time they
are the last people I would ever talk to about it because I didn’t want to hear
them struggle to talk, or allow them to hear me. I just wanted to deny it and
tell myself I’m not like them. I always had this idea that I was fooling the
specialist and I didn’t really have the condition I was diagnosed with, but I
wanted to get their help anyway.
In the treatment room were a lot of machines and about
four assistants alongside the surgeon. Then came the horrific realisation that
this treatment involves injecting botox deep into your throat using a long
needle which enters through the front of your neck. You just have to be brave.
They poke around and make you say ‘eeee’ until they receive the correct signal
on their computer which tells them they located the right muscle to inject
into. The idea is to paralyse the muscles that are constricting. A day or two
after the procedure, I lost my voice completely. I could only whisper and even
when I tried to shout, no sound came out. That is quite scary and it was like
this for about 2 weeks. This reaction isn’t typical and I was wondering if I
would be stuck like this for months while the botox wears off. But after 2
weeks I got my voice back and it was much clearer with no straining. I wasn’t
able to produce higher pitch sounds, but I was ok with that as I could talk
again and was able to let go of that constant stressed out feeling in my
stomach. I remember promising myself if one day I can just get to a point where
I can talk properly all the time, I won’t care about anything else; I will be
happy and confident and will never take anything for granted.
After around 3 months, I noticed the old symptoms coming
back and with that came the stress and the vicious circle clicked back into
gear. I had a series of appointments to continue the same treatment but the
voice problem would always come back well before the next appointment was due
and I was always fearful of the 2 week period of having no voice at all. It’s a
bit of a blur exactly when all the injections were. I think there was only one
while I was at uni. I remember at the end of my 4th year the effect
of the treatment had worn off but I was learning how to deal with it better. I
did manage to have a proper social life and got good results from my degree, so
it didn’t ruin my quality of life altogether, but I would have been much more
sociable and adventurous without it.
When I was 24 I was job hunting and having interviews in Manchester.
My voice was bad at this time, but I was always able to control it better
during interviews. I was resistant to finding a job although I knew it had to
happen and in the end I got a good position as a graduate civil engineer in an
office in Handforth, Manchester. Making a good impression was much harder to do
with this thing constantly affecting me. I did ok, despite being quite different
to most of my stuffy, middle class colleagues. What doesn’t work too well
though is when you are sat in your quiet, open plan office desperately trying
to avoid having to speak too much even though you really need to ask questions
about your job. I remember once one of the draughtsmen started mocking the way
I was stuttering and straining to talk. It was quite rude as I didn’t know him
that well but he was eccentric and one of these people who just says and does
what they want. It made me realise that everyone does definitely notice this
problem but they don’t say anything, maybe because they just think it’s part of
who I am and I have a weak personality. I hated that label that I gave to
myself.
I repeated the cycle of having the botox treatment about
every 4 or 5 months and having around 2 or 3 months of relief. They tried to
mitigate the effects of the initial total loss of voice by playing around with
the dose but it never worked. I guess my condition did gradually improve and
after about 5 or 6 injections within a 2 year period, I felt I should try to
manage on my own. I knew the problem hadn’t gone away but I wrote to the
hospital to say I’ll stop the treatment. As this was a rare condition, I was a
bit disappointed that they didn’t ever contact me after that time to check on
my situation. I never got a satisfactory conclusion or post investigation. I
still have no idea what the initial trigger was… the Becotide inhaler, the
general stress I was carrying, genetics… or sometimes I go back to thinking I
was misdiagnosed, despite having all the symptoms and not being able to snap
out of ‘whatever this really is’.
From the office job, I got a work placement in Blackpool
and spent over two years there. I think I went through a period where the voice
problem cleared up altogether and I wasn’t even thinking about it anymore,
probably because I was drunk all the time. In hindsight it must have been there
because when I got put back to the office in Manchester, around 2008, it
started getting me down again. I was commuting from Crewe to Manchester in a
boring job with people I didn’t get on with and working for a company who were
slowly going bankrupt… so I wasn’t enjoying myself that much. I started trying
to write songs and wanted to get my voice working properly once and for all so
I could record my songs. When I was younger I thought I had an ok singing
voice, though I never recorded myself and was always too shy to perform in
front of anyone, but I knew it sounded ok and friends at uni said this too
after drunken singing sessions. Even though my speaking voice was a bit better,
this condition had put a stop to any hope of being able to sing again (hence I
started learning lead guitar instead) as I still had big problems with pitch,
tone and flow. I booked myself in for more speech therapy sessions, going over
the same techniques as before… controlling my breathing, concentrating on air
flow and diaphragm control… but with all this practice and concentration, I
didn’t really see any improvement at all. Voice quality didn’t improve and it
was still making me tense and miserable. It felt like a hopeless situation, I was
so bored in my job and also started getting flare-ups of psoriasis. The speech
therapist referred me to a counsellor to see if I had some sort of anxiety or
depression. I did learn some useful techniques about how to approach certain
situations that made me feel anxious, but ultimately I was disappointed as I
didn’t feel this lady was intelligent enough to understand me and thus I didn’t
show myself to her.
In 2010, after a random holiday in Malta, I decided I was
going to do something drastic to improve my situation, starting with quitting
this job that was contributing a lot to my negative outlook. I was on a site
placement in Whitby but instead of doing my job, I spent most of my time
researching jobs to apply for in Malta. I had decided to try and go over there
for a year to mix things up a bit and I was also hoping the sun would clear up
the psoriasis. By summer 2011, I had managed to find a decent job in Malta and
although I felt bad about moving away from family and friends in England, it
was a good decision to embark on this adventure because it really expanded my
mind. In fact it’s 2016 and I’m still there.
The job involved construction site visits and chairing
meetings with contractors so a lot of talking was involved. I still had the
same issues with vocal tension, but the problem had evolved into a general
inability to maintain constant natural pitch and resonance rather than more
extreme constricting and permanent straining of vocal chords. The thing I
learned quickly about Malta is that it’s not a place which will accommodate
shyness or people with pathetic voice problems. People are generally louder and
more aggressive in comparison to the English and if you hesitate for a second
you are probably going to get interrupted. Perhaps my brain became rewired to
suit this mentality or perhaps I just benefitted from spending time in a new
place with no pressures, but at some point towards the end of 2013 and at the
age of 33, I realised I don’t really have a problem to talk anymore. That still
doesn’t mean I’m a good speaker as even now my voice is not 100% better, but
after 11 years of dealing with this issue, I finally felt I had enough control
over my voice such that it wasn’t causing me stress anymore. I managed to break
the cycle. I still sense my vocal chords want to squeeze up at times, but I got
much better at relaxing myself to stop it happening. Also, if I get stressed
about something in general, I do hear it in my voice, but it’s only a temporary
thing. My goal has simply become to never get stressed about anything. Obviously
that’s impossible, but I have become a lot more philosophical and patient, trying
to understand everybody’s problems, why people act the way they do, why things
are how they are and why we are all even here in the first place.
The singing voice issue hasn’t resolved itself yet as
there is a weakness and lack of control that I know I didn’t have when I was
younger, but I still have hope that I will recover completely. This doesn’t
mean that I am admitting after all that this is purely a psychological problem.
When I think back to how I used to suffer with this, I am certain it must be
partly neurological because of how impossible it was to find relief. But I
believe the brain can be rewired to eradicate some neurological conditions,
however ignorant that may sound to experts on this topic. I believe in order to
beat this condition you need to change your whole outlook on life and do
whatever it takes to eliminate all of your stress triggers and increase
dopamine levels (naturally). I would still like to find out more about what is
the most likely initial cause of the condition… either emotional stress or some
physical trigger such as the issue with the Becotide asthma inhaler. Recently I
started using another preventative inhaler called ‘Relvar’ and it definitely
does strange things to my voice in a similar way… I lose power, the higher
register is cut off and it seems to reduce my lung capacity somehow. I also
wonder if there is a chance that all the treatment I had could have damaged my
voice permanently such that it is impossible to recover 100%. Maybe I spent so
long straining that I did some irreversible damage. I won’t let myself believe
that, but as this is a rare condition and I don’t have much information to go
on, I don’t really know anything for sure.
I feel ready now to communicate with other sufferers of
this condition. Not just to research causes, effects and treatments, but also
to try to help those who might be in the early stages of it. I still get angry
when I read about it and how rare it is and even now I don’t really want to
accept it. But hopefully somebody else who is affected by this condition or something
similar will read this blog and realise that things will get easier in time. If
a doctor tells you there is no cure, you don’t have to assume they are always
right and you don’t have to accept that this is a permanent problem. This might
just be a reaction from your brain to tell you to make life changes. I am also
still looking for new ways to do this so would appreciate any help I can get
too.
RB
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