Self-Carer

I was reflecting recently about how much work goes into managing my chronic illness/disability. At some point it dawned on me, a realisation I’ve had before but which nonetheless floors me every time, that not everyone has to do this work. I began to wonder whether the amount of work I do makes me as a carer.  

When we think of carers, we think of a parent caring for their sick child, an adult child caring for their elderly parent, a partner caring for their gravely ill other half, a person paid to support others with tasks they are unable or struggle to do themselves. We don’t think of people like me, but I’m starting to think maybe I am a carer too, it’s just that the person I care for is me.

I want to acknowledge here that there are many people who carry much greater caring loads than me, whether for themselves or for someone else, because there are people far sicker and/or more seriously disabled than I am. While this is true, it doesn’t make my experience of caring for myself, nor those of others like me, invalid. What’s tricky is that there is no term for us. We don’t qualify as carers, but other labels like being chronically ill/disabled don’t capture the care work we do for ourselves. We are, to coin a term which I think helps to encapsulate it, self-carers.

Distinguishing the self-carer experience from that of the non-chronically ill/disabled adult

I want to spend some time fleshing out the distinction between the experience of the self-carer versus that of other adults because you may be reading this thinking that all adults are self-carers because we all have to look after ourselves – that’s what being an adult is about.

The defining feature of self-carers is that we are independent adults who live with some form of chronic illness/disability(s), whether this be a mental illness, a genetic condition they’ve had since birth, an illness such as fibromyalgia or endometriosis which has developed at some stage in their life, or something else besides which impacts our daily functioning and demands we engage in a range of self-care practices (the next section on what I do as a self-carer will help explain what some of these practices are).

For the non-chronically ill/disabled adult, the self-care load is relatively light, like carrying a small backpack. Sure, there’s stuff you need to do, but it happens without too much thought or fuss. For the chronically ill/disabled adult who is single and living independently, it’s heavy, like carrying a fully stocked multi-day hiking pack. The list of stuff you need to do in terms of self-care is long and involved – it takes time, energy, discipline.

Here, I want to draw your attention to the fact that the non-chronically ill/disabled body is carrying the small backpack, while the chronically ill/disabled body carrying the fully stocked multi-day hiking pack. The body which has more capacity to carry a heavy load carries less than the body which has less capacity does.

For the non-chronically ill/disabled adult, the self-care load doesn’t feel overwhelming and is very manageable, just as a small backpack is relatively easy to put on and carry around each day. For the chronically ill/disabled adult, the load can feel overwhelming and be challenging to manage, just as a fully stocked multi-day hiking pack can be a bit of juggle to get on and is hard work to carry around each day.

For the non-chronically ill/disabled adult, their health status and ability to carry the load are predictable and usually quite good, like carrying that small backpack in an urban environment with its straight, flat paths. For the chronically ill/disabled adult, their health status and ability to carry the load are unpredictable and at times not great at all, like carrying that fully stocked multi-day hiking pack on the winding, undulating paths found in the wilderness.

For the non-chronically ill/disabled adult, forgetting a particular self-care action is not the end of the world, just as anything forgotten can simply be purchased at a store in a city. For the chronically ill/disabled adult, forgetting a particular self-care action can have serious detrimental impacts, just as it does in the wilderness where an item forgotten cannot simply be procured – there are no stores in the wilderness.

What I do as a self-carer

I hope the backpack metaphor has helped to draw out the distinction between the self-care load carried by most adults and the self-care load carried by self-carers like me.

Another way to draw this out is to provide you with a list of some elements of what I do as a self-carer. While some of these actions may be familiar to the non-chronically ill/disabled, please keep in mind how significant they are as a load when combined and carried every single day. I’ve divided this work into five categories: chronic illness/disability admin, daily habits/practices, emotional labour, managing relationships, and responding to and managing being more unwell.

Chronic illness/disability admin

• Booking and keeping track of appointments (General Practitioner, psychologist, physiotherapist, pain specialist).
• Keeping track of prescriptions (getting them made up before I run out, going back to the relevant medical professional once I’ve had the last repeat made up).
• Managing my calendar and activities to align with my energy as best I can (eg limiting the number of things scheduled each day, avoiding scheduling things at times when I know I am often quite fatigued such as Friday nights).
• Writing up my weekly planner on a Sunday so I can mentally prepare for what the week holds, know where the stress on my body will be most acute and assess where there are firm commitments versus things I could move if required.
• Updating my migraine tracker app every time I get one so I can see any patterns in migraine triggers, frequency, duration, location of onset, day of onset etc and relay this information to medical professionals.

Daily habits/practices

• Deciding what the symptoms I have when I wake up in the morning mean about what I should do with my day – can I go to work? Can I go into the office or do I need to work from home? What sort of hike will my body tolerate today?
• Consistently checking in with my pain and energy levels throughout the day and calibrating my activity to what my body needs/can tolerate.
• Drinking plenty of water.
• Eating regularly and well.
• Moving my body in some way which gets my heart rate up and warms me from the inside.
• Ensuring I have everything I need with me when I leave the house. This includes water, because becoming dehydrated is a recipe for all sorts of unwanted issues (eg headaches, feeling light-headed etc); food, because if I don’t eat every few hours I will get light-headed and faint; painkillers, because I never know when a headache or migraine may strike; and a face mask, because I still wear on to protect myself in certain settings such as at the grocery store and on the bus.
• Putting myself on my yoga mat, pressing play on some music and lighting incense every afternoon, even if I’m not really feeling it.
• Doing something joyful such as singing, cooking or eating something especially delicious, getting out in the garden, spending time with trees, reading a good book or talking to a friend.
• Being conscious of, and limiting, the amount of time I spend on my phone.
• Taking my medication each night.
• Maintaining impeccable sleep hygiene, including not looking at my phone for at least an hour before trying to sleep.
• Writing down three things I’m grateful for each night.

Emotional labour

• Consistently working at accepting my chronic illness/disability.  
• Managing my expectations of myself.
• Actively cultivating gratitude for the good things in my life.
• Responding to the complex emotions which arise as a daily part of living with a chronic illness/disability.
• Cultivating a self-compassionate inner dialogue.
• Giving myself validation for my efforts.
• Taking time to celebrate the wins, especially the wins which don’t necessarily register as wins with others (eg for me, spending three days of the work week in the office and feeling okay on these days is something to celebrate as it’s quite rare, but spending three days in the office appears fairly banal to others).
• Self-soothing with physical touch, sound etc.
• Being resilient and keeping on keeping on even when things are tough, which they regularly are.
• Keeping sight of myself of my purpose.

Managing relationships

• Managing my reactions to other people when they say things which are out of step with my reality (eg assumptions that my Wednesdays off are great fun or that because I’m young I have a lot of energy).
• Finding times in my calendar when I can spend time with people I love.
• Communicating my needs to my manager, work colleagues, friends, family, medical professionals I see etc.
• Trying to put words to my daily experience for those close to me who I want to tell and who themselves want to understand.
• Saying no to invitations I know will not be feasible for me, even when I’d love to say yes.
• Finding ways to extricate myself from catch ups or gatherings when I can feel my body telling me it’s had enough.  

Responding to and managing being more unwell

• Surviving acute symptoms like migraines, insomnia and severe abdominal pain which typically arrive without warning and are relatively frequent parts of my experience in the world.
• Getting myself home safely when acute symptoms like migraines strike while I’m away from home.
• Doing the basics – getting myself showered and dressed, making cups of tea and hot water bottles, buying groceries and cooking food, attending appointments and taking necessary medications.
• Continuing on as best I can through a flare-up when there is no end in sight.
• Writing messages to my manager, work colleagues, friends, family etc to explain what’s happening and excuse myself from commitments if/when required.
• Deciding how much to share with the various people in my life.
• Rescheduling meetings and catch-ups after being unable to attend due to ill-health.
• Thinking of and arranging more manageable alternatives to meetings and catch-ups (eg getting a friend to bring takeaway to my place instead of us going out to dinner, speaking on the phone or a video call instead of meeting face to face).
• Asking for and accepting help from others if/when I need it.
• Responding to the difficult emotions such as grief and anger which arise as a result of being more unwell.
• Managing the negative self-talk and judgments which can arise when I am more unwell.

I could probably go on, but you get the picture. It’s a heavy load which requires a range of skill and competencies: organisation (to keep on top of all the chronic illness/disability admin), discipline (to keep up those daily habits/practices), emotional intelligence (to facilitate the emotional labour), interpersonal skills (to enable competent relationship management) and resilience (to respond to and manage the periods of being more unwell).   

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It is hardly surprising, having read the above list, that at some point most weeks, often when challenging symptoms arise such as a migraine or a night of insomnia, my mind will wander into magical thinking to imagine a world where the self-care load is just a tad less heavy. Oh, to move through life with the greater ease that a shorter list would facilitate! But I know everything on that list is essential.  

After more than eleven years of living with a chronic illness/disability, I also know that everything on that list has been honed to its simplest, most sustainable form to make the load as light as it possibly can be. If we go back to the metaphor, what’s in my multi-day hiking pack is lightest, most carefully engineered gear on the market. Nonetheless, at times it weighs on me. Nonetheless, I go on with it because I must.

My motivation for writing this has been to make visible what can so easily be overlooked and unacknowledged – the complex care work of the self-carer. I hope reading this has helped to make this visible to you.

Love, hope and peace from Emma.