"Loneliness expresses the pain of being alone, and solitude expresses the glory of being alone." - Pau Tillich

It's #LonelinessAwarenessWeek 2023

People who are neurodivergent, chronically ill, disabled as well as being carers, are significantly more likely to be affected by loneliness. I know this, being all the above.

I struggled as a young, single carer for two children with significant medical needs, with one at home as their neurodivergent needs escalated. It felt like the elderly received the most universal exposure and financial support and I was stranded.

As a single parent money was scarce, and I didn’t receive much support benefit wise. Poverty does not help. My other child was used to not having much except for a party with his friends, a sleep-over or playing football. He also dealt with so much being a carer for his older sibling and I know must have affected him with extra caring duties plus lack of social activities.

My health deteriorated, yet I was dismissed. I ended up being cared for by my own children. That is hard and they asked me if I was dying. I had no answer for my increasing inability to even breathe.

As for being disabled or chronically ill, we often lose education, social connections, and social mobility that so many more privileged people take for granted. Our 'spare' time is spent recuperating, for the next working week. We do not have energy for clubs and hobbies that so many well-meaning people recommend to us. We lose out financially as health issues which co-occur with neurodivergence.?For me this was Hypermobility Ehlers-Danlos syndromes affected nearly every part of my body, joints, skin, tiredness, stomach, other organs, lungs, but mainly pain.?Yet, I had no diagnoses for either and no belief.?I knew I was different but just not believed by anyone which left me where??I had no support in my hard fought for late career and literally fell apart physically in 2015. I lost my career and income, nearly my life.

There is also plenty of research about loneliness for neurodivergent people (source at the bottom). I know my eldest only had one birthday invitation despite our attempts to invite others. My children are accustomed to not receiving presents and cards although I used to double up as much as possible. We get used to not doing events or celebrations but at least the ‘performance pressure’ is taken away.

I am often lonely on times such as holidays or big events, like so many others. I cannot often commit, and it becomes a habit. Disability or illness matters take over and caring for others now including older relatives. Working in a voluntary team, but not able to afford to go to parties-and feeling the lack of support contributes to this. ?

I am still alone, not always lonely, but determined that I and my members, are part of our community and network.

Our charity is different. I know and our members understand these aspects and its impact.?Being part of our community & support network matters. We are open to all the above although limited in what we can do, we do not go by privilege. Want to know more about how we can help you? Go to www.sedsconnective.org SEDSConnective

Reference : Lodder, A., Papadopoulos, C. & Randhawa, G. Stigma of living as an autism carer: a brief psycho-social support intervention (SOLACE). Study protocol for a randomised controlled feasibility study.?Pilot Feasibility Stud?5, 34 (2019). https://doi.org/10.1186/s40814-019-0406-9

Sipowicz, K., Pietras, T., Podlecka, M., & Mokros, ?. (2022). The Association between Depression and Perceived Stress among Parents of Autistic and Non-Autistic Children—The Role of Loneliness.?International Journal of Environmental Research and Public Health,?19(5), 3019. https://www.mdpi.com/1660-4601/19/5/3019