The sound and silence of living with an invisible chronic illness

So as a little follow up to that guest post, I want to string together some thoughts about my chronic illness, focusing on the sounds of the symptoms and the silence I have tightly wrapped around them over the years.

The sound and silence of living with an invisible chronic illness

Chronic fatigue (CFS) or Myalgic Encephalomyelitis (M.E) is an aspect of my life I don’t often talk about, on or offline.

For me, it’s like the quiet kid in the classroom who’s afraid of raising their hand, their head is down, shoulders hunched forward, eyes fixated on the table or floor in front of them, afraid of looking up – wait, maybe some of my own traits are coming through here – but at home, that kid is chatty, happy and loud, not afraid of saying what they think. 

And that’s it, my chronic fatigue likes to make itself known at home, in my body. Its sound bares weight on my shoulders, pushing me down until I’ve sloped back onto the warmth of my bed with no energy left to spare. 

As another symptom is added to the list, the sounds of CFS become louder, gripping with true intent. 

But no matter how debilitating it can be, CFS’s impacts still remain invisible to others. It’s an illness that falls silent in front of the public eye but the pain and exhaustion still persists, the sound becomes louder inside, not manifesting to the outside world – well apart from those under-eye bags that no amount of concealer will ever cover up completely. 

But still, people are none the wiser unless I choose to speak.

And that’s something I haven’t done much of if I’m honest. 

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I was told as an overly tired 11 year old that I had an under-active thyroid and that was it, with a tablet to take every day, problem solved. Only it wasn’t. And then came the diagnosis of Coeliac disease but still, with the thyroid medication and gluten free diet, I was still tired.

Have you got your violins out yet?

I went through a spell of thinking I was crazy, with people questioning why I was missing so much school. I ‘didn’t look ill’ and I didn’t know how to address that comment. People weren’t aware of the debilitating affects of my chronic illness, they couldn’t hear the screams of the pain or the tears I shed when everything got too much. 

I didn’t know how to fill the silence with an explanation that would give my symptoms justice. 

“You don’t look ill” and “It’s just tiredness” were the words that echoed, still being heard in the distant void. Acting as proof of the misunderstanding that surrounds invisible illnesses.

But I was ill, I really was. 

And I felt myself shrink under the symptoms of my illness

I woke up every morning hoping for more energy than what I had the day before, only to be met with the bitter reality that whatever I was experiencing wasn’t going to go away overnight. 

I was finding my illness difficult to comprehend and despite the relief that came flooding in after my diagnosis, an internal battle persisted and I wasn’t sure how to explain my symptoms to others. 

And so I stayed silent. 

Despite the urge to shout ‘I’m not crazy, it wasn’t all in my head’ from the rooftops, I thought that combing through the details of my invisible illness would mean that I’d be submitting myself to some kind of vulnerability; my life was already so full of questions about my vision impairment and I guess I didn’t want to exploit myself to any regarding chronic fatigue. 

And I think that was fair enough, especially at the beginning. 

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But I’m still not very vocal when it comes to my chronic illness and I now realise that I need to translate my symptoms into words, I need to explain their true impacts. Not necessarily online, although I know that hearing you’re not alone can help, but it’s something I definitely need to break the silence about in my life offline otherwise how will people know? 

It’s been about five years since I was diagnosed and yet I still struggle to break the silence. Maybe it’s because of the uncertainty of people’s reactions or maybe it’s just because I don’t know how. 

I was recently thinking back to my trip to London with my friends last year, we were making our way through the bustling streets on our first day in the capital and the exhaustion was building up inside of me. I was dragging my feet a little and I dropped the words chronic fatigue into the conversation, it surprised me that they weren’t really aware of my illness, had I not gone through the details before?

It turns out that I hadn’t and that’s when it dawned on me that the invisibility of my illness and my silent words about it meant that even two of my closest friends were left in the dark.

And that, in a way, was a sad decline into the realisation that maybe, just maybe, I was yet to accept and acknowledge what CFS was doing to my life and that’s why I didn’t talk much about it. 

I was so tangled up in this web of exhaustion that trying to break away from it was taking even more of my energy and maybe the words that I could use to explain my condition were stuck somewhere in there too. 

So maybe it’s time I try harder to untangle those words. Maybe it’s time I start giving my illness a voice.

I guess I’m doing that by writing this and that guest blog post but we’ll have to wait and see what the next step will be.

For now, I’m accepting that these sounds are ones that I’ll carry on hearing, even if they’re not heard by others. The voice that whispers I need to be mindful of how much I take on one day coupled with the exhausted voice which punctuates each movement that has been too much, they still lie there in my mind somewhere. 

But as I become a little better at restoring some kind of balance, I feel like I can allow these sounds to filter through, not allowing them to hold on to every fibre of my being. 

They can of course still be heard, the air sometimes carrying them closer from the distance, making them almost tangible. They strengthen through repetition, acting as reminders that I’m tired, I’m weak, I’m light headed.  

But I’m learning to live with them.

The reality is that the sounds of living with a chronic illness will never be silent, it brings with it an air of frustration, guilt, loneliness, not forgetting the inevitable exhaustion. 

I’m forced to accept the fundamental truth that living with a chronic illness isn’t a walk in the park, well not one that isn’t coupled with exhaustion and weakness at least. I’ve had to accept that with every day I push myself too far, the affects of that lie on the horizon ready to be felt again, not that they ever fully went away. 

The uncertainty of each passing day, not knowing how the symptoms will vary from one to the next can be draining in itself and it presents mental limitations as well as the physical ones. 

It can be lonely and hard to explain, and I guess that’s why I’ve not been able to find the right words.

But as more people are breaking the silence surrounding their own stories, I hope it’s only a matter of time before others, me included, have the confidence to do so too.

I now follow so many amazing people who talk openly about living with an invisible chronic illness and the sound of their messages are ones that deserve to be heard. 

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So whilst chronic fatigue still dominates how I live my life some days, I realise now that I have to agree to exist with it, sometimes in uncertainty with those dormant sounds which don’t let on as to when they’ll become louder. 

They’re unremarkable utterances that I’d rather not hear but they exist, still. But over time, I’ve become familiar with these sounds despite the fact that I hope that one day, they’ll be nothing but a whisper camouflaged by the wind, I hope that now I can use these sounds to speak my story and let others know that they’re not alone. 

Some days are better than others and I’m lucky that I’m in a better position with my chronic illness at the moment, but there are still times when I have to drag myself through the exhaustion, the weakness, light headedness and brain fog,  all those thorns that scar. But these scars are proof of our battle and no matter how tired we are from the journey, we know that we are strong. And whilst we might be too exhausted for the next challenge, we know that we can move forward because we’ve done it before. We can do it again. 

With that small glimmer of light at the end of the tunnel, we know we can do this. 

So, through writing this, I hope I’ve managed to bring the internal sound of my chronic illness into the outside world, just for a moment, to break a little of the silence that I’ve longed to fill for some time now.

No matter how debilitating these kinds of conditions can be, I guess they do offer us a wealth of different challenges, experiences and perspectives, things we don’t always welcome but maybe our experiences can be things to be used to help others who might be in a similar situation.

So tell me, have you ever struggled to talk openly about your chronic illness? Is it something that you wish people better understood? I for one answer these questions with a strong YES, as I’m sure you’ve gathered but I don’t want my voice to be the only one in this conversation so I’d love to know your story. Because chronic illnesses can be lonely as well as draining so I think it’s important that we realise that we’re not alone and I think here is as good a place as any for that to start sinking in.

Elin x