Sometime toward the end of 2022 I started to experience problems with voice loss. As a person whose voice was perhaps their trademark - I was often asked to read in assembly at school, or to read in church, or to speak up in class discussions, it was one of my strongest assets. I have a strong Oxford voice and am probably considered very posh and well-spoken. I wouldn't have minded being a newsreader - I was often given narrator parts in a play. I was a trained teacher, and, aside from my final days of my last teaching practice, my voice carried me through effortlessly. I had a few days of not being able to speak at the end of my last teaching practice, and had to use hand signals, or the other children to express my commands due to laryngitis - it was quite a laugh and I got through it, but my voice was back a few days later. I had a few episodes of laryngitis throughout my life - lots of people do, or have it as part of a cold, but fast forward to 2022, and my voice started to disappear more often.
My voice is a strong part of my identity. Receptionists in hospitals know my voice before I give my name. I can communicate clearly using my voice, without having to work at my facial expressions. I can be heard from a long way, but I can also speak softly. Sometimes people have teased me for sounding posh, but when I first started to lose my voice, I started to not feel quite like myself anymore. It happened gradually and then escalated so that I wasn't able to speak for days at a time, sometimes even up to ten days. It made me feel very lost, lonely and isolated.
I remembered seeing an ENT specialist via Zoom - she was a Speech and Language Therapist or SLT. She said that my breathing wasn't very effective not helped by having surgery to remove my first rib and scalene muscles bilaterally due to the condition Thoracic Outlet Syndrome which I still have, and have a blog for that. https://thoracicoutletsyndrometos.blogspot.com/ The SLT helped me to breathe more effectively and to not take in so much carbon dioxide, but it didn't help with my voice.
Over Christmas 2022, I was playing Monopoly with my family and I wasn't speaking well, and I just ended up getting more and more frustrated because I wasn't being heard, or during Christmas meals. I felt estranged, left out, alienated just because I couldn't be heard. I felt more tired, and this was just the beginning.
Because of the fact that I have hypermobile Ehlers Danlos Syndrome hEDS, a heritable disorder of connective tissue, my vocal cords are massively more flexible than other people's - hypermobility is about having a larger than normal range of movement at joint ends, but it can affect the vocal cords and the stretchier collagens affect things like the skin, gut lining and blood vessels leading to other conditions and syndromes.
Here is a picture of someone with normal vocal cords:
Here are some hypermobile looking vocal cords from the Cleveland clinic. I will try and ask for my own images in due course.
In March 2023 I saw a "community ENT" consultant who said my vocal cords were clear and normal, and there were no obvious nodules and no evidence of caner, but he had no idea how abnormal my vocal cords range of movement actually was, and this was not commented upon or documented. He wasn't helpful with management other than to sit with my head under a towel of steaming hot water.
Throughout 2023 my voice became worse. There were increasingly more times when it was, at best, husky, or totally absent. Some people said it sounded sexy and in the early days it was amusing, but I soon became more withdrawn and the telephone, an item of communication became more one of torture and distress because I couldn't be properly heard. I had to go through very long-winded security questions, because they could not get a voice match. It got harder and harder. People kept asking me to repeat things. I got frustrated. I was sad for the person who once had a very clear and audible voice. The voice who could captivate audiences of children or adults (during adult courses). I withdrew from public contact and even more so from seeing friends. It was particularly challenging with a friend who had hearing loss and there was a six month gap in our meeting up at once point.
Eventually the original SLT I saw sent me to an EDS expert ENT Consultant and their SLT, also an expert in EDS. When they did my first scope they explained just how flexible my vocal folds were and how wide I could move them, abnormally so. I agreed they could use the images in order to educate other experts.
It felt such a relief to understand that my vocal cords were different to most people's and they also thought that my menopausal status was contributing to this sudden change from normal speech to the broken, husky voice that I now had. My first appointment was in late 2023 and the SLT gave me two exercises to do - one involved rolling my tongue and holding it for ten seconds, twice, and then to do this 5 x per day. Little exercises and often, and is the best way to work with hypermobile people - like baby bear as in Goldilocks and the Three Bears - little and often, not too much, and frequent small exercises. The second exercise involved sticking my tongue out as far as it would go and hold for ten seconds and repeat again and then do up to 5 times per day. Other exercises involved blowing bubbles into a bottle of water, and a final exercise added later involved sighing as if I had seen a ghost on inhalation and exhaling deeply in relief I hadn't really seen a ghost!
These exercises helped me tremendously actually very quickly, and for a while I improved, but then things took a turn for the worse again, and when I was reviwed in mid-2024, a repeat scope showed the same striking hypermobile images, but again, nothing sinister. I was recommened a Voice Aid - a product that made a huge difference for me. It amplified my voice very well for a small gadget at a reasonable price. It made telephonic communication much easier, and also speaking in a room full of people - well, I could be heard, and the voice sounded like mine.
My confidence soared, and although I still get episodes where my voice does go or dips for a few hours or a day or two, these episodes are often linked to fatigue -a very common symptom for patients with hypermobility spectrum disorders and EDS. I would become fatigued immediately in the times when my voice went completely, and before active treatment begun.
I am now much better - it is the end of 2024, and I fully expect to be able to join in with family activities and intend to be heard - but I will perhaps give Monopoly a miss - it only makes everyone grumpy and even the most normal voice could get challenged in a debate over a hotel bill. Personally, I'd rather have a quiet chat with someone.
Our voices are a strong part of our identity and what makes us, us. I really felt bereft of losing my voice. I became very depressed and withdrawn, and extremely fatigued and low. I am so pleased to have gained myself back, and I must keep up with my exercises, and also have Voice Aid if i need it - details can be found here. https://voiceaid.net/
19-11-2024
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