Making my first long-term photography project while chronically ill

Reflections on working within limited energy and creative constraints

I’d love to hear about your approach to making work while in or recovering from illness or burnout - please do let me know what has helped you!

Here’s where I’ve gotten to so far - and I’m keen to improve further.

Photographing ME/CFS while suffering it

I’m making a long-term photo project about ME/CFS. I’m 12 months in and probably only halfway done based on my current rate of work. I’ve been ill for 20+ years, life-limited for 10 years, becoming increasingly and then almost-entirely housebound in 2023. On a VERY good day, I might put the bins out.

To me ME/CFS feels like: I ran a half marathon yesterday, got hammered, danced all night and then didn’t sleep. And I’m not allowed a coffee. And I’m coming down with something.

I feel rough all the time. Feels like my brain, body and thoughts are full of glue. I’m irritable, flat, exhausted, heavy. Headache, body feels stiff, aches. Sweaty armpits. Probably haven’t showered in three-five days. Lovely.

This seriously hampers any creative mojo. Yet I still make photos - because it makes me feel vaguely human. The upside is worth the cost, most of the time.

My project is being made entirely at home, indoors. In a slightly chaotic and often messy modest mid-terrace house, currently with our mother in not-law staying + her furniture, boxes, very barky Jack Russell. We’ve multiple stuck DIY projects, a cat and dog, my partner has a busy self-employed job and considerable arthritis - plus the usual constant domestic and self-employed pressures.

It’s less than ideal, but it’s real life and that’s a part of the project too.

Motivation & purpose

I was feeling really glum about my condition and reducing quality of life. Each day has mainly become about symptom management.

An idea began to sustain in my mind - inspired by Whitney Dafoe’s photography and blog - about using photography to help raise awareness about ME/CFS.

It’s something I can pursue with brief windows of capacity, without leaving the house or being too reliant on external circumstances.

It’s also an intrinsic motivation - it supports my values, it has a purpose and it’s satisfying. Just what I need!

Preparation - aka p*ss poor planning

This being my first photo project I didn’t know better than to make an organic start under the loose notion of conveying my take on the ME/CFS experience.

I knew I’d be working indoors, using at-hand objects/scenes and with available light. I made 10 images as a rough outline and felt there was something to go on.

My mentors were politely encouraging, but - quite rightly - said I had a long way to go to make the them more directly relatable to the condition and to be cohesive with each other. I welcomed the critique and re-focused my thinking.

It felt good to be under way. Of the original 10 photos, four remain, and may/not all make the final edit.

I thought I’d complete the project in six-12 months, but my health had other ideas: it got worse.

It’s been slow progress and somewhat stop start-y! Two years is a more realistic time frame.

When I undertake my next long term project, for comparison, I will first try a more structured approach; mind-mapping my thinking at three layers* - initially working loosely to help unpack my aims e.g.:

• Concept (the overall theme and project’s aims, audience)

• Narrative (what the project and each subject within it says)

• Aesthetic (how it should look/feel, ideally cohesive across the project)

*Credit: Maria Lax as mentioned in Process Driven podcast, with Jeffery Saddoris.

I suspect I’ll find this slower to make a start with, as I prefer to make an instinctive start and follow my nose. I suspect I may over-think it and set out being a bit uptight and contrived, but who knows. It’ll be a nice problem to have either way.

What to photograph

I’ll add to this as other inputs become known to me, but as a start this is how I inspire and organise myself;

• Feeding my inspiration - constantly absorbing photo books/blogs/websites/essays, art, films, podcasts (I absorb something most days, when capacity allows), around ME/CFS and around photography - such as conceptual and expressionist, art documentary, and projects related to science and health

• Noting ideas - I have 20-30 potential subjects/ideas in Apple Notes at any time

• Putting interesting subjects/objects to one side e.g. in a cupboard, to grab when the moment takes me

• Bearing in mind my mentors’ (and partner’s!) feedback

• Joining photo discussion participation groups/events online, when I’m able (rare)

• Being open minded and gently observant at all times

• Watching for and being responsive to the appropriate/optimal light for the subject. E.g. if it’s an environmental image in a particular place - the same light happens twice yearly in the same place and way. This said, much of my work has been made in flat or indirect light!

Fermenting the idea

Some ideas form quickly into a makable image, others need fermentation over time.

Time is a key ingredient - perhaps because the idea is then honed by the other experiences and un/related thoughts meanwhile. Some ideas merge into one, or serve as placeholders to be reinterpreted in a better way. Some ideas fade away and others remain and grow.

I don’t try to force an idea into being. Not unless it’s time sensitive. I usually just choose something on my Apple Notes list that speaks to my current mood and that give me a positive feeling in the moment.

Sometimes I can be found wandering around the house clutching an object that I want to photograph, but the breakthrough isn’t coming, placing it in different settings to attempt another day. I usually stop at this point, but sometimes pushing through brings results - albeit at a greater energy cost (risk of crash/PEM) and usually the image benefits from a second or third attempt another day when I’m more able.

Often I’ll be doing something quite unrelated when inspiration comes - but looking at lots of visual media definitely helps. I do try to absorb mainly good quality images, as distinct from bingeing photos on social media or junk TV.

Rest, sleep and pacing are the biggest enablers for me. Fatigue and stress suppresses my inspiration and mojo - but sometimes that ragged, jangly and tired energy can provide a mood that seems to aid relatability in subjects that manifest this feeling.

Constraints

I like a brief, however loose. So, being all-indoors helped narrow down my options.

I wanted the work to feel a bit disorientating, repetitive, boring and banal, as well as being distinct from environmental portraiture. Mainly, to push myself.

Two dozen subjectss in, I found that I’d arrived at an aesthetic almost accidentally. These images were repetitious in style, mostly with subdued colours, and often photo’d against a muted or fading blue/grey/green/black backdrop. This gave me something to expand upon and evolve.

Subjects are often photo’d in similar situations - e.g. on our kitchen counter tops. Though this may bite me later if they look too same-y! I’m also aware that roughly half the images don’t have much depth of scene (don’t feel especially 3D); this is partly intentional to convey the flat feeling of ME/CFS, but I will embrace greater depth in subjects that suit it.

I’m using just three lenses (50mm equivalent for 90% of images). Most photos receive only basic edits. No PhotoShop (brain fog vs learning). No flash, I just wait for the right light to coincide with my capacity. This all helps, I think, for consistency.

Small expectations

I confess, I have always held great expectations of myself and the world. ME/CFS has meant I’ve had to accept my limitations as best I can. An ongoing challenge.

I struggled with this while entering the project - a new camera and OS to learn, first time working with digital medium format and floundering trying to find my creative groove.

In essense, my approach includes;

• Previsualising the subject/concept and pondering its meaning before attempting to photograph it helps, rather than figuring it out in the moment under the self-created pressure and frustration of high hopes vs creative block

• Remembering “I have plenty of time to complete this project” also reduces pressure

• Regarding each photo-making-attempt as just that, an attempt - perhaps one of many

• Familiarity aids momentum - camera gear, project, aesthetic, subject, object, editing etc. - it all gets easier as I go further in the project. I can also now better communicate with my partner how to focus and press the shutter for images where I’m the subject, reducing faff and stress for us both

• Seeking feedback from others - mentors, partner, community - ensuring I’m onto the right path and that it’s coming together as a body of work

The day’s energy budget

My body doesn’t tolerate coffee, so I can’t just get caffienated and power through, that always ends badly. After 20+ years of trying, I’ve accepted I can’t have coffee in my life!

My fatigue is variable day to day, hour to hour. If I over exert I suffer ‘Post Exertional Malaise’ (overwhelming fatigue, usually sofa bound for two-five days) and it’s an effort to read or to watch TV, let alone be creative.

On good days the fog and fatigue clears - usually late morning or mid afternoon - and I might have a 15-20 mins window where I can attempt a photo. I have to weigh this up with what else is going on today, and the next few days, or I’ll be in energy debt.

I becoming am better at accepting that there are periods of low productivity and long gaps in making the work. These seemingly non-productive gaps actually help creatively, giving invaluable distance from the project through which to have a fresh and more objective perspective.

The moment’s energy budget

Sometimes I don’t get the camera out, I just mock up the subject and see if it might work - there’s no real rush.

When making pictures I aim to work efficiently but gently, being careful to maintain my nose breathing cadence and positive mood. This is hard when cognition and hand-eye co-ordination are impaired through brain fog, and I get clumsy, muddled and cross with myself.

If I’m not careful my energy soon crashes and then there’s frustration, swearing, anger. Not conducive!

If the dog’s shaking nervously from my frustration it means I ought stop. If I try to push through this is usually counter productive. I really must listen to the dog more! She’s my stress barometer.

Most photos I make indoors require a two stop under exposure to capture the highlights and deep shadows, so that’s pretty easy. This means I can concentrate on subject, composition, light and ensuring I’ve not missed something distracting creeping into the frame.

I work in Manual mode, with a tripod, and I know my lenses fairly well. This provides a nice slow pace, with a gentle focus.

Previsualising using a camera phone

I can’t easily make self-portraits this knackered. Fine tuning the approach would mean lots of moving between being behind the camera and sitting for the image. So, like Debbie Magee, my long-suffering partner and assistant Sharon presses the shutter on these images.

We’ve avoided the stress of my inability to communicate what I want from the concept by first mocking some images up using a mobile phone. I then digest these test images over a few hours/days, settling on the best approach to later make for real. Her creative input is invaluable too.

Reduced stress → more keepers → happier us :)

Satisfaction

It’s hard to put into words how nourished and joyful I feel by making something that I feel meets my creative objectives and values.

It’s also a much-needed little victory over ME/CFS. It’s proof that I can grow creatively in spite of my illness.

I’m getting better at accepting when things don’t pan out, whereas before I’d just apply more pressure to myself.

And it’s so nice when I get feedback on Glass and encouragement from Sharon, my long-suffering partner. She has an innately good eye and is both supportive and doesn’t BS me!

I’ve a long way to go, but am really enjoying what photography offers me: it encourages me to think more deeply, to look and appreciate what’s around me and it’s a fresh learning exercise that I actively embrace!

Looking forward to hearing what’s helped you maintain some creativity or creative output while poorly or in recovery! Thanks.