My pain occurs when I talk. It’s as if talking injures me on the inside. When I use my voice, I can feel that I’m using the wrong muscles, or that the muscles I’m using aren’t supporting me. Somehow, I’m hurting them when I speak. The more I use them, the more it hurts where it shouldn’t hurt – under my shoulder blades, my chest, my neck, my upper back, and even my face. Then, when my voice is tired it feels like someone has squeezed my throat. I can only make quiet whispers. Even quiet whispers send painful convulsions to those areas.
It’s the specificity of my pain that makes me feel most alone with my chronic illness. I don’t know anyone else who suffers from pain when speaking, let alone pain caused by hypermobility. People don’t understand my condition. How could they? It is as weird and unfamiliar to them as it is to me. They often think I have a sore throat. I want to explain to them the true nature of my pain – where it resides and what it feels like. Maybe then it will feel less alien. I often don’t explain, as it feels indulgent. I’m still fighting this feeling whilst writing this piece.
My voice pain started in 2019, completely out of the blue. Since then, it comes in waves. I am rarely able to forget about my voice completely. The limitation on how much I can speak is always there, either at the back of my mind or felt throughout my body.
After graduating in 2018, I was elected as Education Officer at Sussex Students’ Union, where I represented ‘the student voice.’ Six months into the job, I found myself unable to speak for more than fifteen minutes without pain. I had been elected to speak, and now I couldn’t. The irony was not lost on me. It was a back-to-back meetings role where staying silent didn’t feel like an option. The stakes were high in these meetings. Big decisions were being made that affected students, and my voice and opinions mattered. I had an impossible decision to make: should I hurt my body or let student concerns go unheard? After taking sick leave and not getting better, I told myself I only had a few months left in this job, and it was too important for me to not give it everything I had. I decided to push my voice through the pain.
I attended the spaces I was most passionate about, such as a ‘Decolonising the Curriculum’ pilot I co-created. In these workshops, my pain was at its most paralysing. I typed my thoughts on my laptop whilst a kind friend of mine read them aloud. I was so grateful for this yet found myself ashamed by the spotlight that was being shone on my pain.
I remember breaking down in tears at the Students’ Union leaving party because I was in so much pain. I told a friend and fellow officer that I didn’t know what to do, and she asked me if I thought I might be causing ‘irreparable damage’ by continuing to push my voice through the pain. It was the first time this thought had occurred to me. I had only been trying to survive my present circumstances. I hadn’t imagined a future with my illness in it. Thinking of the future would mean stopping, and I was not ready to stop. I told her I didn’t know the answer. She called my mum for me and spoke the words I could only type.
When I’m having a pain flare-up, every word counts. Literally. With everything I want to say, I have to ask myself: Is this sentence worth the pain? How much do I really need to say it? Could I use gestures or facial expressions instead? No words can be wasted – small talk is a thing of the past. I have to prioritise my conversations, both in person and on the phone, as sometimes I can only have a few a week. It turns out that projecting my voice in video calls is more painful than talking to someone in person, so the pandemic has made these decisions even more complex and has added to the isolation that everyone is already feeling.
Who I want to prioritise giving my voice to has become a central question for me. If I can only speak a few times in a week, who will get to be the lucky ones? My parents? My closest friends? My classmates? But what if I also want to have a spontaneous phone date, or an essay supervision, or an old friend asks to catch up? Making these decisions has been painstaking. Often, my emotional needs directly conflict my physical needs. I may desperately want to talk to a friend but know that it will likely send me into a flare-up. This inner conflict can make it hard to act in the name of self-care and decide which of my needs to prioritise. It can be tempting to isolate myself completely so that I’m less likely to talk and hurt my voice, even when a connection with my loved ones is all I want.
I have decided that capitalism and enforced productivity don’t deserve any more of my pain, so work is at the bottom of my vocal priority list. But I know that this is only possible because I was lucky enough to find an administrative part-time job to do that doesn’t demand too much of my voice. I’m saddened that I have to choose between a job I’m passionate about and protecting my body.
This is me during my final week as a Students’ Union officer. You wouldn’t know that I was pushing through agonising pain just by looking at me.
That’s because no one knows you’re in pain unless you tell them. This has been an extremely difficult thing to learn. I used to think to myself: Why can’t they just pick up on it? How can they be unaware of something that my body feels so intensely? I would often become angry and resentful when people didn’t realise that I was in pain. But how could they possibly know?
When I started experiencing vocal pain as an officer, I realised that people had to be made aware of my pain so I didn’t suffer in silence (pun intended). I wanted them to know that I wasn’t being rude or uncaring when I didn’t speak. As a last resort, I started wearing a badge that said ‘it hurts to use my voice.’ Although I hated the unwanted attention and worried about what people thought, wearing the badge was liberating. It meant my pain was visible and no longer just ‘my problem.’ The badge freed me from having to navigate my voice pain entirely on my own and meant that other people could act more considerately towards me. This was a wake-up call for me about the importance of boundaries and asking for help.
When it comes to intimate relationships, I find boundaries much harder. I can’t bear my pain inhibiting my communication with people I love. I used to think that my friends would find our friendship too difficult when I struggle to talk. I thought they would become bored of the mundane, everyday reality of my pain – of me cancelling hang-outs and phone calls for the same reasons again and again. I thought they’d consider me flaky, moany, and unreliable. My best friend, Sophia, reassured me that my friends would still love me even if I wasn’t able to talk as much. They aren’t just friends with me because it’s ‘easy.’ I found this hard to believe for a long time.
Sophia was right – as good friends do, they adapted. They offered to write me emails or letters, or send voice-notes when I said I found talking easier in short bursts. They considered me when I would be left alone in my silence in a conversation and made sure I felt comfortable. When Sophia and I moved into our flat, although we hardly knew each other, she offered to learn British Sign Language with me. When she first proposed this, I couldn’t stop crying. How could someone be willing to put in that much work to be my friend and make me feel cared for?
Sophia was the first friend I made with my voice restrictions, and I spent a long time mourning that this was the ‘version of me’ she had to meet. I told her I wished she had gotten to know me when I was ‘healthy, fun, and care-free.’ But she reassured me that my illness hadn’t made me a lesser version of myself – that my most wonderful qualities hadn’t vanished and I was still me – and our friendship adapted around my illness. I’m eternally grateful for what our friendship has taught me.
I feel so lucky every day to have the support around me that I have. My parents – my three mothers – have been incredible. Whether it’s being with me while I cry, helping me navigate the medical world, cooking me chicken soup, or giving me massages, each one of them offers care in a different way. I couldn’t ask for a more loving support network.
I’m writing this from the midst of a flare-up, two years on from when the whole saga started. I still don’t know whether the pain I’m in today was exacerbated by my decision to push through it when working at the Students’ Union – whether it did indeed cause irreparable damage. If I could go back in time, I still don’t know what I would do.
At my lowest moments I wonder what has changed – how am I still here, voiceless and in pain? But when I think about it, a lot has. I have changed. I have learned to listen to my body, to care for it and not to treat it like a machine. I have learned how ableism and capitalism make you feel guilty for being in pain or needing more rest and how much internalised shame I have around being perceived as ‘fragile’ or ‘sick.’ I have learned how to communicate my needs to those around me, rather than waiting for them to pick up on them. I have learned how to advocate for myself and for my body.
I am still learning. That I can’t control my body or my healing process. That I am doing the best I can, and that is all I can do. That every day that I wake up in pain is not a failure of mine, or a sign that I haven’t worked hard enough to fix it. That my pain is not my fault. That I am responsible for my body, but not my condition. That I am more than my pain. That I am a full, complex, wonderful person. That I have a lot of love to give and receive, and that there are lots of other ways to give and receive love than talking. That I am not voiceless just because it hurts to speak. That I still have a lot to say. That my voice matters.
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