I was lucky enough to have a short submission to SICK ZINE accepted, see below for a scanned entry the full version of the entire zine will be available online shortly and I’ll post the link. This was part of a project led by Lara Plavčak during a zine residency at Fish Factory in Cornwall.
Going through any illness can be a solitary experience of feeling powerless and misunderstood by doctors, family, and society. Facing your limitations and establishing new perspectives can be as much of a stressful factor as coming to terms with your diagnosis. That is, if you are ‘lucky’ enough to get the right diagnosis. But we want to read your side of the story. We would like to hear your thoughts on illness, chronic illness, mental illness, injuries, and pain from your experience or the experience of someone close to you. Send in your written contributions of any literary or non-literary type (poems, short stories, diary entries, anecdotes, lists, advice columns, recipes etc.) by Thursday 25 July 5 pm. They can be funny, sad, informative, anything you feel comfortable writing, as long or as short as you want. The only requirement is to write something you would want to read on the given subject.
It’s a mixed bag
A diagnosis can be bittersweet. Sometimes, it affirms what your body had already suspected. It validates your lived experience with an official stamp from a medical professional. It can be the culmination of a long, drawn out journey through dismissive doctors, incorrect diagnoses and life-changing symptoms that just won’t go away. You may have reached your diagnosis by chance, almost like someone has been playing a pinball machine and they’ve miraculously managed to make the right move. You may have waited a long time for it, but it could still come as a surprise. It may offer the recognition you’ve been waiting for, but it could also put you in to a tickbox that you don’t want to be in. It can turn you into a statistic but can also finally offer access to the support and medication you’ve been desperate for.
A diagnosis can be such a contradiction. It can bring clarity because sometimes there’s a plan. It can bring with it a flood of question marks too. Some questions might be answered, but others, those about the future and, just, you know, how if might affect your life…they can all loom over you and change in nature and importance. You may have complete faith in your medical team, but you could also feel as though you’re part of a lottery. A diagnosis is important but it doesn’t define you.
You might feel isolated and that’s okay. Sometimes this isolation can come from a place of being diagnosed with a rare condition – there’s a lack of recognition or existing knowledge base that can soothe you when you need to be reassured. You might feel like a guinea pig and waves of uncertainty may wash over you as you become the person in the TV programme, the magazine, the gossip. You are now ‘so and so with X condition.’ It might not be something that you’ve previously recognised in yourself but it’s okay, you are more than your diagnosis.
You’ll grieve for the past version of you, the one that wasn’t faced with the weight of a diagnosis but you’ll also grieve for future you. Will you be able to achieve the goals you had originally set out, can you travel as much as you had dreamed? Will it impact on your friendships and relationships? Your work? Will you constantly be comparing your body’s capabilities to those who are more able, or at least those who are more visibly care-free on social media? The answer is probably and again, that’s okay.
I’d like to reassure you though. Chronic illness can help clarify a lot of things. It offers a powerful and focused lens for you to figure out what is important. It helps iron out your values and really makes you appreciate the good stuff. I can assure you, that your ‘better’ days will feel truly exhilarating and you’ll never take advantage of them. You’ll get to find out just how much people care about you, a unique insight into how loved you are. You’ll form new friendships and discover support networks you never quite knew you needed. They are there. Social media accounts, articles, films, TV programmes and art, all created by an inclusive community you can be a part of. It won’t dictate, it won’t exclude or diminish but it will be there when you need it and even when you don’t.