(TW// Mental health: anxiety, depression, delusions, breakdown, mentions of serious illness.)
As a neurodiverse person without a diagnosis, I struggled endlessly to find a sense of community in which I feel like I am not about to be turned away or judged for having a vaster understanding of my own neurological differences than medical professionals have yet cared to investigate. Perhaps it’s always been my fault for seeming mostly able to cope, even when I am at the end of my tether and can always feel a sort circuit and full shutdown is mere seconds away. Never mind that before I was prescribed my current medication, there was not a single day of my life that I did not burst into tears for the smallest things through feeling overwhelmed and overstimulated. That at 27, I still struggle quite badly with food smells, tastes and textures. That I’d been a really bad hypochondriac throughout university (believing I had throat cancer, breast cancer, mould in my lungs etc. all at different points throughout university). That the minute I removed the thing that was causing me the most cognitive distress (attempting to play the bassoon at reasonably professional level – something I only realised, after 12 years of being convinced I could get to, I’d never actually be able to achieve), things suddenly got much clearer…
You get the idea. I’ve always known I was different. At 22, when my delusional breakdown took me out of university for 8 months, I came to realise that I was very definitely not neurotypical. Especially when, after therapy and being on medication for a while, certain characteristics I often thought were part of my chronic mental health issues (anxiety and depression) that I’d been suffering with since a teenager or even before were still profoundly affecting me. I’d still get frustrated with certain motor skills, and I’d become withdrawn still if I had to be in an uncomfortable social situation for long periods of time. My globophobia got worse as years went on, as well as the intensification of social issues, organisation issues, and hyper-fixation.
It wasn’t until I was struggling socially in adapting to my new work environment at age 25 and the fact I realised that for three years I’d been deluded in the belief I could become friends with one very specific individual that I decided to get referred to be tested officially for neurodiversity, in order to gain some form of proper clarity in what I am dealing with. A year and a half later, I am still waiting. I’d like to go private…but money.
QUEUE MY DiO INTERVENTION ❤ (Thank you, Matty!)
Last autumn, my friend Matty invited me to attend a livestream on Twitch which he mods. It was very different from the gaming streams I had become used to attending in the few months prior to my introduction to Do It Ourselves…but if anything, as Matty had said, it was a nice change. He linked me to the stream, and the carrd. I remember the first thing I read about Do It Ourselves: Diagnosis or not: ALL ARE WELCOME! It felt like there might be finally somewhere for me to cultivate relationships with people who struggled in similar ways to how I did.
Do It Ourselves and the Power of Collective Knowledge and Support System for Chronic Illness and Disability
Do it Ourselves (thus named because of the goal to self-empower people with chronic illness and disability to, as well as seek diagnosis, share experience and give advice on ways to improve life while managing chronic illness and/or disability) is a livestream taking place usually on Monday and Thursday evenings on Twitch, in which brilliant Amy (sometimes accompanied by the lovely Tim) hosts and facilitates an informal and candid discussion on matters pertaining to chronic health conditions, both physical and mental, while giving insight upon personal chronic illness experiences. Though Amy has much experience as a peer support worker, and is a strong self-advocate as someone who lives with chronic illness herself, the discussion is a collective dialogue between chat and host (moderated classily by Matty and Andrew), often surrounding a specific topic, or (especially on a Thursday) chilled, random chat in which creative outlets, self-care and sharing experiences is always encouraged.
Being seen, Feeling valid
Everyone’s voice is encouraged to speak, is heard, and is upheld as valid. In a society where we are all too often taught that ‘everybody struggles with something’ and in which we are therefore forced to repress the issues we are going through (often exacerbating specific issues like social anxiety), this stream is a beacon of hope for those who attend. Through my own research and feedback kindly made available to me by Amy herself, I was able to obtain short testimonials from attendees of these streams. I will share a few below, along with some of my own thoughts:
‘DIO came at a great time for me. I’d recently been diagnosed with anxiety and – what with lockdown- was feeling isolated. The community are so welcoming and I feel I can participate despite my social anxiety. Amy keeps a great balance between talking about her own experiences and allowing us to share. When I was (even more recently) diagnosed with depression, I felt comfortable reaching out to chat and have felt supported and valid…’ – Liz
How important it is that we have a place that we feel heard, empowered and wholeheartedly accepted! With an absence of physical support systems at this moment in time, DiO streams have become such a crucial lifeline for so many of us with the additional load of chronical illness to bear. Indeed, many plan their time so that they are able to make sure they can attend Amy’s streams, such as the listener who wrote:
‘Amy has not only created a place where people can ask questions about their chronic illness issues and then leave again she has created an actual community that has been going strong for multiple months now. It’s something I’m forever grateful for and makes it so that I genuinely look forward to every single stream and will plan everything in a way so I can make it. This is something that is so special and something you don’t find often on the internet but the fact that I found it, that everyone in this community found it just makes me so incredibly happy and especially in a time like the year 2020 it’s just something I can truly say helped me a lot, both in advice that is given in the stream (either by Amy or by chat) but also in receiving and giving support to anyone who needs it! What a wonderful group!!‘ – Ilse
‘It was wonderful and so informative, thank you Amy! It definitely struck me that everyone there last night was there for the same reason – to share and learn, and very grateful for you facilitating it.’ – anon
The thing that is cropping up again and again in these testimonials I have received from Amy is this idea of empowerment through shared experience. The message that everyone’s life and understanding of themselves is much more important than the thoughts of institutions that put up barriers and that seem determined to inhibit one’s ability to gain understanding about the truth of themselves, their condition etc. That although the irony is that as people with chronic illness we don’t necessarily have the energy to fight for rights, diagnosis, etc., that through gaining a better understanding of symptoms, struggles etc. through the voices of others in a community, we may actually receive a better fighting chance of achieving those things. Of making those changes. Of building better futures for ourselves and people like us.
‘The sheer relief I get just hearing other people realising they are not alone with their symptoms or their situations makes the world a MUCH better place. Screw those clinical staff not wanting us to talk freely!‘ – Theresa
‘Thank you for talking about what you do on your streams ❤ Ive been looking for something like this for a while since I dont really have anyone to talk to about stuff like this in real life :)’ – anon
An all-too-common dilemma for people with chronic illness is the inability to talk freely about the things they struggle with/that no one is listening to them properly when they do talk! There is literally no such thing as overshare within this little community that Amy has facilitated. There is a level of comfort in being comfortable with voicing one’s own issues aloud, finally, without being chastised, judged, or doubted.
THIS IS WHY WE STAN AMY AND DOITOURSELVES ❤ It has been an absolute joy to be among like minded people who are genuinely caring of the lives of those they have befriended through DiO. Seeing people feel inspired to care for each other, to organise their medication, to practice self-care and self-empathy etc. is just so humbling and I am cherishing the moments in the streams I manage to get to when I too feel listened to, validated and often, advised by those (virtually) around me in a way I am able to use moving forward to make my own life better!
Thank you so much, Amy!
If you are someone who feels they could benefit from Do It Ourselves, check out timetables by clicking > here < Monday evenings 7-9pm and Thursday evenings 8-9pm ❤