Rosie - Loneliness Awareness Week and Carers Week
Hi gang!
Happy June – your random side track for today – I don’t think that 6 ‘looks’ right for June which is strange because I feel like September and October look like 9 and 10 even though they literally mean seven and eight but anyway it’s just something random that bothers me every year.
Less happy June – this week is Loneliness Awareness Week with the theme of Random Acts of Connection and Carers Week with the theme of putting Carers on the Map building on Carers UK’s ‘No Choice but to Care’ report – which speaks to the important connection between these topics as well as their vitality to mark and improve the situation for our community. Yes, our community is one of those random acts of connection that makes us realise the commonality in our experiences and helps put the needs of both neurodivergent people AND their carers on the map.
Like all forms of social marginalisation – exclusion, discrimination and/or a lack of awareness has felt consequences – in 2023 53% of carers reported that caring responsibilities made it harder for them to maintain relationships and a survey revealed that autistic individuals are 9 times more likely to feel lonely than neurotypicals. Similarly, we’ve got to remember that ‘our community’ is not independent of these other marginalising forces and we have to make a more concrete commitment to sustained rather than random acts of connection to reach those facing even more compounded forms of loneliness – be that due to intersections with racism, sexism, ableism, ageism, xenophobia, audism, etc. – because as isolating as loneliness is, it is also connecting, galvanising and transformative.
Loneliness is very complicated – as I described in my Carers Rights Day post – I rely on my mum – a lot. Having her support and crucially her sacrifice mitigates some of the profound loneliness I experience in navigating the neurotypical world. I hope in some way that my steadfast love for her mitigates some of her loneliness too. But we are both lonely in many ways and whilst my loneliness is often put as the problem that others are seeking to solve or help, I think it is also vital to put her loneliness as a carer on the map. We are lonely together, lonely apart and lonely differently.
Loneliness has lots of levels – for me I struggle to articulate my needs or decode my feelings leaving me silent and internally lonely. I am lonely from my heart because I don’t know what I need or what connection means to me. I am lonely from my body because I struggle to interpret bodily signals and so I don't regulate my temperature or dopamine levels effectively or depersonalise. I am lonely within my family and lonely from the world when I feel like I can’t find the right words or when I find that others define my words differently. I am lonely in society because I can’t find ‘my people’ or navigate the rules of acceptance – I am forced to be spiritually lonely and mask to find a ‘community’ only to find that for it to actually reduce my loneliness it would have to support my sense of self. I am also physically and societally lonely due to isolating health circumstances and exclusionary procedures and policies that make social, educational, peer support and work environments a source of sensory strain or incomprehensible to me. In trying to connect, I have been confronted with my long-standing loneliness and a realisation that I actually don’t have any contacts to reach out to – I am reliant on random acts of connection despite all my efforts. I am conceptually lonely – being seen as label first, person second, facing the preconception that I am unknowable and fundamentally different if not faulty. I have to have stereotypical autism interests or abilities to access autism spaces of connection, making me lonely from my individuality. My desire to avoid rejection makes me crave connection to someone charitably giving their time specifically to connect to lonely autistic people rather than wait for a random organic connection. It’s not just a processing issue that makes it hard for me to explain my loneliness, it’s also a translation issue of trying to understand the ways I am understood in trying to work out how to understand myself. I am lonely because I don’t identify with what society says I should want or be and because in seeking a neurotypical definition of connection I make myself lonely from my emotions or otherwise punish myself by denying myself needs deemed socially unacceptable or starve myself to try and numb the pain of the loneliness. Is my loneliness my fault or solely internal?
Similarly, mum is lonely in many different ways. Seen as compensated by maternal duty she is read as a carer and her own needs are deprioritised, devalued and unmapped accordingly. The lack of external understanding of my needs makes her lonely to share the struggles of what caring actually entails and her ‘choice’ to put up with my frustrated outbursts at not being able to explain my own needs and then my criticisms of her for not being able to guess them makes her lonely from herself. She is lonely from her body as she ‘chooses’ to not to eat or sleep to manage my distress or not to do the things that spiritually comfort her in case they annoy me. If she felt her true emotions she would be seen as uncaring and so she keeps her own needs and the toll caring takes a secret from me and from society. She keeps them hidden from her heart so she can keep going. My difference makes her lonely from a stereotypical motherhood ideal and all those social milestones and family photo opportunities. To retain social value as a carer she too must mask and not mourn this loss. There is no way for her to win – if she cares how it makes sense for us she is criticised as cowering to me and not fulfilling the societal family norm – if she enforces ‘tough love’ ‘care’ she breaks our connection. There is therefore loneliness between us despite the physical proximity of our relationship. Because we can’t speak about our loneliness in society, we also don’t speak about it to each other and are consequently more lonely than we have to be. The secret also makes her lonely from support and from social recognition – from having her suffering ‘on the map’.
Some of this is shared by others in society and some of it is maybe more specific to our experience of neurodiversity. I think most neurodiverse families can appreciate that neurodiversity is always a shared experience – it spills over the individual and systematically alters everyday life, add to this the stigma and the stereotypes from outside and the individual approach doesn’t always make sense. Neither then does the idea that my mum ‘chooses’ to be my carer. I am incredibly lucky that my mum has taken on this task and has shielded me from a lot of the loneliness I might otherwise experience being ripped away from the safety and stability she strives to provide for me. But is this her responsibility as a parent? To forgo her own needs and emotions, to be lonely to make me less lonely?
Is it reasonable to expect that she has some special insight to my loneliness, that she knows how to sympathise with the sense of loneliness that I can’t articulate? I don’t always have the energy to convert the sensory experience to a specific sense in my brain let alone convert this again to shared vocabulary. At these times, I am left only with the word ‘lonely’ which is as unhelpful as ‘sad’ or ‘angry’ when mum is given the duty of trying to respond. We are lonely differently but both our loneliness-es deserve care.
There are some shared senses of loneliness – some random moments of connection that bridge this gap even when I don’t have the words, we both have a referent loneliness and a sadness at a situation that was not chosen by either of us but was also not inevitable.
When I think of my mum having ‘No Choice But to Care’, it can sting, it can remind me of the draining nature and contagiousness of my loneliness. Saying this is in no way meant as a criticism of those who can’t take the strain of the enforced ‘choice’ and who aren’t able to sustain those random acts of connection that have been my lifeboat in a sea of unspoken loneliness. In fact I often find myself angry that my mum won’t say she hates me, that she doesn’t point out how my diagnosis restricts her, isolates her and frustrates her – if she wants to keep me alive she has no choice but to stay silent.
The crucial point is that she has no choice – some of my loneliness and hence some of hers is socially produced – both our loneliness-es matter because they aren’t spoken – mine because of my challenges labelling my feelings or aligning bodily information with social expectations, hers because her caring is seen as her choice and both of ours because society is unaccommodating of my social needs and when support is not in place, my mum is forced to close the gap. She must search for support for me and consequently isolate herself from meeting her own sources of support or else internalise a sense of guilt that prevents her from speaking up and admitting herself to be human – there can be danger in the superhero carer narrative. My mum has every right to resent the loneliness I cause her and we both have the right to be angry at the ways that society increases this burden and silences its articulation through rendering me ‘unknowable’ and censoring her with the guilt-inducing ‘carer’ label.
This is one way that we do have these random acts of connection – because at one level our loneliness-es have a common cause. We don’t say it but we can share solidarity at the ways society responds (or doesn’t) to my brain chemistry and isolates us from social norms as well as how stigma prevents us developing a societal level shared vocabulary necessary to sympathise with different but connected loneliness-es. We share a difficulty of having to be lonely alone and of having to work through neurotypical services that sometimes feel like they try to catch us out – it can be a lonely fight. Similarly, both being new to neurodiversity means we can feel lonely and unqualified in trying to navigate the norms of ‘support spaces’ and embarrassed to admit our difficulties in what should be ‘our space’. It can be lonely when I search for support and am confronted with search results only about ‘managing your autistic child’. As a community we also have to address the diversity of our loneliness experiences as they are mediated through other oppressions. For people who feel isolated, it is important that we have connections where people can find parallels to their experiences, so that we don’t also compound their loneliness.
But mum and I also share random acts of connection at a different and more positive level of our loneliness-es. The feeling of loneliness, of confusion, of exhaustion is innate, shared and sensed. Loneliness hurts – it is agony to see someone you love unreachable and it hurts to experience. It drives us both to care for each other in our helplessness – we have no choice.
Even in our silence and even without the labels that get in the way, we share care for each other so even when we cannot understand each other’s loneliness we feel it and we choose not to ignore it. We can be lonely together.
It doesn’t make the loneliness go away but it keeps us together.
We still have work to do to learn to give ourselves more space to speak so we are not both trying to counterproductively shield each other from our loneliness-es. We need to do the work of systematising our random acts of connection and ensuring that there is space to put mum’s loneliness on the map.
Fellow loners, let’s be lonely together – with ourselves, with our support networks, with our communities, with communities that want to connect but do not find their experiences represented in our support spaces, and let’s be lonely with society. Lets acknowledge that loneliness is actually a point of connection and use our solidarity to map the social and societal causes of our loneliness and choose to advocate and address them together.
Much love,
Rosie
xxx
