On Caring

The laundry is in a temporary state of equilibrium. Full basket, but nothing waiting to be hung up or put away. The kitchen is untidy and not exactly clean, but there’s only one dirty plate and a couple of cups and the dishwasher has finished its cycle. I vacuumed the most visible areas of the floor and there are only a few things (by my standards) strewn around the living room.

On my retreat: Naughty wheat field contemplations

There’s a microwave in the hallway I need to arrange to sell, it’s been there for about a month. It’s surrounded by cardboard and old boxes from ordering things online and backlogged from the rubbish collection strike that’s been going on in my city for several weeks. I feel like I’m drowning in cardboard.

This is about as close as I am going to get to being ‘on top of the housework’ for now, and the closest I’ve been in months. I’ve taken some stimulants so have been able to get up off the sofa for a change, tidy up a little bit and then feel like I can sit down and write something.

I’m 30, and I’m a full-time carer for my partner, also 30, who has Chronic Fatigue Syndrome/ME. It has been difficult for me to identify with this label. Carer.

I never expected to be a caregiver of any kind. I am bad at it. I am inherently untidy and disorganised. I’m creative and crazy. I try to reject gender roles. I’ve never wanted kids. I hate making sandwiches. I value my independence. I am incapable of routine. But here I am.

Imposter syndrome has permeated my life, and the same is true for this self-assigned role. It’s true James can’t usually prepare meals, so lunch and evening meal need to be prepared by me. Laundry and washing up and shopping and repairs and other tasks soon build up when there’s just one of you doing the work and two people to clean up after, spending most of their time in the house. But I feel that I’m not really a carer.

My partner is bright, knowledgeable, capable in many ways. I should be able to do these things for us AND hold down a job, or make art, or get dressed every day. And I think I could, if I was healthy. But I’m not — I’ve been plagued with anxiety and depression and ‘personality issues’ all my life, increasingly have had my own problems with fatigue and chronic pain. Losing my job 5 years ago was the last straw for full-time work. I’m caring full-time because I love my partner, he supports me and has an incredible mind. But also because having untreated and until recently undiagnosed ADHD has left me unable to do anything else right now.

In some ways I’ve retreated into a caring role because it offers me stability, so I don’t feel that am entitled to the label. Perhaps I shouldn’t conflate ‘caregiver’ with ‘martyr’.

I wanted to be a graphic designer, or something creative, yet practical. When, finally, it became obvious that wasn’t going to happen, and I realised that my partner wasn’t going to get better any time soon, I wasn’t going to find navigating work any easier, and my life was going to have to be something very different — I just didn’t have any mental picture of what that might look like.

Until I went on a retreat and met some others like myself recently, I couldn’t see a shape to fit myself into, I had no concept of any role models. I felt that there was nobody in my position, though logic and evidence indicated otherwise. I didn’t fit into a box so my life must not be valid. I wasn’t living up to my potential so I wasn’t really living. I haven’t even really been able to get my head around the idea of being self employed, or being a non-commercial artist — even though I’ve always felt like an outsider at school and work. My dad wanted me to learn a trade; just becoming a graphic designer felt somewhat radical.

Being anything other than a person with a full-time job didn’t seem like a legitimate Thing I Could Be.

A couple of weeks ago I went on a Carer’s Retreat organised by a local Buddhist Centre. I expected all the carers to be older or elderly, that I would be the youngest person there by far. It’s true I was relatively young, but the diversity of the other carers took me aback. Almost entirely women, some older, but not all. A woman and her teenage daughters, responsible for their husband/father with schizophrenia. A mother in her early 50s whose daughter was struggling with a diagnosis of Borderline Personality Disorder and ADHD. Women with disabled children, of varying ages and with a variety conditions. Some older people whose partners had dementia or other age-related illnesses, too.

None of them really expected to be where they are, to have to give up their jobs to care for their family, or for their caregiving roles to have expanded beyond the typical expectations of parents, partners, or even children. Nobody told us this might happen. Nobody told us this was quite likely to happen.

Our society doesn’t acknowledge carers enough. It doesn’t acknowledge the vast number of people living beyond the popular markers of success and achievement. We find ourselves taking care of the needs of others to extents we didn’t expect, because if we didn’t, who would? Popular media and capitalist values tend to sweep under the carpet the large percentage of our lives — as children, young people, sick people, elderly people — when many of us will be unable to work. It ignores that most of us at some point will be functionally disabled. What a magic trick!

One of the organisers of the retreat quoted a statistic:

In the UK, 1 in 10 of us is a carer.

And actually, it’s quoted here as 1 in 8. Yet none of us expect it. We don’t see disabled or neuroatypical people. We don’t see the chronically ill. We don’t see that this could easily be us, our friends and family, and almost certainly will be if we live a long life. We don’t see the roles that may await us which don’t fit in with our plans for a career, to be a successful and worthwhile person. Yet 1 in 8 of us is in a caring role.

I was in awe of the women at my retreat and their strength, diversity and bravery. I felt heard, accepted, and reflected in them. I am now proud to call myself a carer and to count myself among them. But I see their exhaustion, I see the strain placed on them. I am angry that we don’t have enough help and support in taking care of the people that society likes to erase, that our valid selves and lives are invisible. That we are put in a position where free carers’ retreats organised by charitable organisations are so desperately needed. We all need time alone, breaks from our loved ones, time outside of the home. It should be easier to feel connected to a community, easier to help and support one another.

Humans are not machines. We are animals, we are mammals. Warm, emotional, complex, capable of and deserving of love; different, diverse, vulnerable, powerful, unique. Whether we work or not; whether we can be independent or not.

I am breaking down my ideas of what it means to be a productive and worthwhile member of society (they should not be mutually exclusive ). Our contributions aren’t just material or even practical. Outside of a deliberately isolating and demonising system, we would contribute to our communities just by being. I am realising that I am neurodivergent, that my friends are neurodiverse, that worth doesn’t just come in a business suit. It comes in all shapes, in all kinds of ability, in all areas of strength, in all ways of being. Differently abled and non-neurotypical people are not burdens, or shirkers, or even all that unusual. We are not broken cogs. We are social animals and against all efforts to put us into round holes we are truly diverse.

When friends, family, loved ones, or members of our community need help, they give us a gift. The opportunity to help, the opportunity to act kindly, the opportunity to be needed. What would life be like without that? People’s differences, passions, talents and needs truly are special. There may be billions of us on this planet, but within our various social circles, each of us is unique.

We are a rich, privileged country. We can afford to take care of our citizens. And so we absolutely should. We should be leading the way. We should be treating people like humans. We don’t need to interrogate those who find it difficult to work or who need extra help. I’m trying to cleanse all that propaganda about laziness from my system, to deflect from us — myself, my partner, my friends — the psychological consequences of repeated interrogations of whether we are Really Disabled.

Going on that retreat — a beautiful Quaker meeting house for 2 nights in the Oxfordshire countryside — and meeting those other carers in their various situations, I felt valid. In going and taking up the opportunity, I felt I deserved it (sometimes you have to accept something offered before you will feel you deserve it), as did everybody else there. I felt proud to be a carer, and to be cared for.

I am a carer, and I’m neurodivergent, and I don’t work, and that’s okay. It’s more than okay. It’s my life.
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