People often ask how I manage to do any writing while living with invisible illness, particularly as I also have a full-time job.
And of course it isn’t easy. Some days are worse than others health wise and I can go from being apparently pretty healthy to completely incapable of pretty much anything in the course of a week, or sometimes even a day. Recently I had a health day so bad, I was reduced to tears trying to fasten my own handbag and then again trying to open a salt canister!
So there are some things that I do to help manage my writing career, which may also be helpful to anyone struggling to prioritise any tasks around any illness.
Flexibility
I’ve been known to bend deadlines until they snap. If you’re in a position where it would do more harm than good to write professionally (I’ll come back to non-professional writing), then more often than not, forcing yourself to work is not worth the cost to your health. I use an app to prioritise deadlines, with paid work being the most important, work for awards/competitions coming second and unpaid work (like this newsletter and my blog!), being things that can wait if they need to.
Maintaining your paid work as a writer is key, particularly as missing deadlines can affect your relationship with an editor permanently if they start to see you as unreliable. Obviously if you can’t make a deadline, most editors will cut you a little slack, but only if you keep in touch and let them know when you can produce the work.
When it comes to awards and competitions, there are hundreds of them and you can’t possibly enter them all, so if you miss one for health reasons, it probably isn’t a big deal. If you already have something perfect for an entry, a light edit is often enough, so don’t create a lot of stress overthinking it and just get it submitted.
As for unpaid work, people will often wax lyrical on the value of exposure, usually the people who don’t want to pay for work that’s actually worth money. No amount of “exposure” is worth sacrificing your health. Ever.
Remember the love
Regarding non-professional writing, journalling and writing for the love can be one of the best self-care activities you can do if you’re having a bad health day. I try and keep a journal most days and also make a point of listing happy memories, things that I’m grateful for and any creative achievements that have happened that day, being careful not to focus on writing that might be seen by others as “successful” eg published, accepted, shortlisted etc, but also reflecting on getting a first draft written or editing an older piece for re-submission.
I also find it therapeutic to write poetry when I’m struggling so make an effort to do that, particularly if I am having trouble with my mental health.
One of the problems with writing professionally can be that once it becomes a job we forget why we loved writing in the first place, so doing some writing just for the love of it can be really good both for your health and help you remember what it is you love about being creative.
Adaptability
We’re lucky to live at a time when writing doesn’t rely on a quill and paper and we can use technology to help with writing if we need to.
I do usually write by hand, but if I can’t there are other ways around it. When I dislocated my shoulder and had some nerve damage I used dictation software instead of typing. I’ve also dictated notes into my phone which I can then go back to later.
It’s much easier to do research using the internet now, which means that you don’t need to go out to libraries or to locations. You can even take a virtual walk around a neighbourhood if you need to using street view, which can be really helpful if you’re not able to get out and about.
Other things I use to help with my health when working include a standing desk and having my laptop screen set to low light to prevent migraines which can aggravate my other symptoms, particularly my chronic fatigue.
Openness
Being open with people you work with about your health encourages them to be understanding if you’re not able to work on a particular day, meet a deadline or need to take a break.
I’m also a big believer that being open about your health, particularly if you have an invisible condition, is a great way to raise awareness and get people talking more about life with disability.
Of course you should never feel pressured to disclose elements of your personal health if you’re not comfortable doing so, but it’s worth bearing in mind that most people will react well to you sharing details about your health with them and it might make managing things going forward easier for you and everyone around you.
Appreciate your experience
Embracing your own different experiences can be great for creativity and showing the world through your eyes in your art is the one thing no one else can do.
No matter what I’m writing, whether it’s a story, article or poem, I’m still a female disabled writer, and that experience will always shape my work. I often include disabled characters in my fiction (and no, disability does not have to be a key plot point because disabled people do have lives outside of their disability) and a lot of my poetry reflects on my experience as a disabled woman.
These are all things that you can do to make working while living with illness easier, but don’t forget that people you are working for and with also need to make the effort to be inclusive and flexible. Being treated unfairly because of a disability is wrong and, in most (unfortunately, not all) countries, illegal, so don’t put up with discrimination, bullying or other harmful behaviours. No job in the world is worth your health.
Take care,
Donna
Self-care snippet
I love baking and think it’s a great way to spend some time mindfully and have some lovely treats when you’re done too! This year I used our Halloween pumpkin to make Chocolate Pumpkin Bread. It was really lovely (and healthy!) and gave me inspiration for a new story.
Things I’ve seen, heard, read and talked about
Sociability An app which is helping disabled people find accessible places. I’ve started using it and it’s looks great and, importantly, they get that there’s more to accessibility than popping down a ramp, so that’s better than some from the off. You can read more about accessibility and the things people don’t always see as inaccessible in this earlier edition.
Climate change conference must stop excluding disabled people, says new UK coalition An important piece showing how disabled people are disproportionately affected by the climate crisis and outlining why it is vital that disabled people are included in the conversations to a work towards a healthier more sustainable planet for all of us.
Inequality & Pay Gaps Persist for Workers with Disabilities A piece on the enduring nature of the disability pay gap, which is especially heartbreaking bearing in mind how disabled people are also disproportionately affected by the cost of living crisis.
Up to one in three English hospital beds occupied by patients fit for discharge A look at the tragic situation being created by a lack of social care funding and poor wages in the social care sector. Unfortunately many people seem to think the answer to the social care crisis is for carers to work multiple jobs to pay their bills and people in the community to do care work voluntarily rather than actually treating care workers with the respect they deserve and paying them properly for the vital work they undertake.
Legoland ride policy change: Brett family returns to park An older story but one I was discussing with someone at work recently. This is an uplifting piece about a family’s triumph against the establishment after a hideous and humiliating experience in a theme park, which should, of all places, be an inclusive and safe space for all children.
Gianni Infantino ‘feels gay’ and ‘like a migrant worker’ as he recalls being bullied for ‘red hair and freckles’ This is the first men’s football World Cup I haven’t been excited about in my football memory. This speech , which included “Today I feel disabled.” in its list of ignorant declarations, has really highlighted so much that is wrong about this year’s event. It’s incredible and I don’t even have the words.
Meet Gwen Manikin…a healthcare manikin aiming to change medical training A lovely story about Gwen who happily helped out the medical industry by being a model for a medical manikin which accurately reflects the body of a child living with Down’s syndrome, thereby enhancing the medical training our doctors and nurses receive and potentially saving many lives by reducing hesitation when carrying out procedures such as resuscitation on patients with Down’s syndrome, which can be complicated by physiological differences associated with the condition.
Longest surviving heart transplant patient reveals relatives died after dismissing surgery The emotional story of Sandy Law who is currently the longest surviving heart transplant patient.
Doddie Weir Testimonial A reflection on the life of Doddie Weir who has tragically passed away following his diagnosis of Motor Neurone Disease (MND) in 2016. The £50m research funding announced last year has still not been allocated.