May: a month of 'awareness'

acknowledging the need for greater understanding and the challenges to it

Awareness weeks and days and months are allotted throughout the year, a point of publicity and engagement with one cause or condition or another. May seems particularly busy, with Dementia Awareness next week and Mental Health Awareness, Maternal Mental Health Awareness, Deaf Awareness, Dying Matters Awareness, Black Inclusion Week, and International Day against Homophobia, Biphobia and Transphobia. It’s Stroke Month, Viral Meningitis Awareness Week, Sun Awareness Week, Food Allergy Awareness, Coeliac UK’s Awareness Week, National Clean Air Month, World Fibromyalgia Awareness Day, and Zombie Awareness Month (fittingly, a tongue in cheek way of highlighting the need for preparing for disasters, such as a pandemic, so that’s all going well). May is also host for Spinal Cord Injury Awareness Day, Tourettes Awareness Month, World Hypertension Day, Action for Brain Injury Awareness Week, Child Hospice Week, Type II Diabetes Prevention Week. It’s World Home Mechanical Ventilation Day, Hats for Headway, National Epilepsy Week, Digestive Health Day, World MS Day, and World Melanoma BRAF Awareness Day. It’s a crowded place of (unmet) need for awareness and understanding.

Moving Mountains represents a number of the above themes and many of the above are represented by many of its authors. To be able to contribute something I hope is useful here, May is especially notable for me as it hits several things aligned to my own experiences. This year I have been invited to contribute a piece of writing to the university’s research blog for Mental Health Awareness Week (I will share once it’s published) and I have been working with ME Action UK to produce a series of readings from Moving Mountains for ME Awareness Week. It is also EDS (Ehlers Danlos Syndrome) and Hypermobility syndromes awareness month, the two closely connected themselves (see our last Moving Mountains event with Polly Atkin and HMSA for more information).

When you develop chronic illness, or any kind of acquired disability, you have to become your own expert in how to manage and care for your body, and advocate for these new needs, in a way that can be a whole new level of labour. It can be an additional layer of trauma when these needs are not met, or indeed not even recognised or understood. Those with ‘invisible’ disabilities can be impacted especially, as you ‘look fine’, you can ‘pass’ in that ‘other’ world (the ‘Land of the Well’, or the land of people with normative bodyminds). Difference is highlighted there, rather than access, and awareness raising each year feels like it can be another emotional burden on the people living with these things rather than a development in public interest and knowledge (or access and acceptance).

I’ve been engaged with raising awareness and understanding of ME/CFS (and subsequently Long Covid) through my own background in healthcare for nearly a decade. I worked in the NHS as a psychologist for many years in mental health settings, before I became sick. Appalled at how poorly people with ME/CFS have been treated and (mis)represented, and traumatised by my own experienced of trying to understand what was happening to my body when I first got sick (what was later attributed to a post-viral illness), I have written at length and spoken at psychology and psychotherapy forums, advocating for better understanding and treatment amongst healthcare professionals. The illness is difficult enough to deal with, the additional burden of inaccessible and prolonged periods without diagnosis, absence of treatment, and the gaslighting that often runs alongside this only adds to the trauma and demands patients have to negotiate and manage. I’ve recently finalised several chapters for psychotherapy books on these themes and have been involved in the Department of Health and Social Care Implementation Process for the new NICE guidance, but despite this work of so many of us there is very little (if any) tangible change to show for it (yet).

And what happens after the awareness? Is there a greater awareness? What works in achieving this? Individuals’ stories can I think be helpful, not just in raising public understanding but in making others who share their experiences feel less alone. I see it as community building, I would like to see also community nurturing and developing. As energy allows, I hope to be able to do more of this.

For now, I am doing what I can in using my own experience, hoping that sharing what I have learned helps others. In conditions more commonly seen in women there is inherent medical misogyny, the level of dismissal, undermining, and neglect is multiplied for those of additionally marginalised groups who face further barriers to diagnosis and healthcare due to age, ethnicity, religion, sexual orientation, and gender, not forgetting how impossible it will be in areas of conflict, where those with disabilities outnumber those without (as Leah Lakshmi Piepzna-Samarasinha has written for Alice Wong’s Disability Visibility Project, everyone in Palestine is disabled).

For this year’s World ME Day, I am joining the #MillionsMissing, on my sofa in my blue pyjamas looking at the blue skies outside (blue is the colour adopted to signify ME/CFS), and thinking of those around the world who are living with this desperately misunderstood and mistreated complex neurological condition. If you would like to learn more about ME/CFS (and Long Covid, and their relation with one another), I began with a website to pool resources and writing and while I have not been able to update it in some time there are some valuable links to other organisations and resources in this link to ZebraPsych.

Today also launches a series of events for Moving Mountains in collaboration with ME Action UK, the first of which can be found on this link, and a new reading from different contributors through the coming week will be posted daily on social media and at the end of this post. Look out for Dillon Jaxx, Nic Wilson, Louisa Adjoa Parker, Feline Charpentier, Alec Finlay, and me.

Moving Mountains is dedicated to all who live with chronic illness and disability, with a special mention of Marcus Sedgwick, who lived and died with ME before seeing this anthology published. You can see him speak about his own experiences of ME in this ME Action UK interview, along with the founder of the Society of Authors, Authors with Disabilities and Chronic Illnesses Group, and author of The Choice, Clare Wade, and Penny Joelson, from 2021 on this link. Thanks also goes to their interviewer, the very wonderful Denise Spreag at ME Action UK, who has been so brilliant to work with in collating our readings this week. The book Marcus mentions he was working on in the video, All In Your Head, was published shortly before he died and is now available from libraries and bookshops. Marcus Sedgwick was a contributor to Moving Mountains and sadly isn’t currently in the collection. I hope his beautiful essay can be included when it is published in paperback.

Denise Spreag was also a brilliant support with Moving Mountains when we ran the ACE supported workshops in 2022. Nic Wilson was the author who ran the creative writing workshop for Sussex Wildlife Trust, supported by ME Action UK. A recording of this webinar is still available to watch again online - join us here if you would like a guided hour writing with Nic (Nic also has a newsletter on nature and writing of her own, you can find here, if you would like to sign up and join her).

Tomorrow is Writing for Health and Healing Day. Writing is one thing that, when I’m able, supports my mental health and sense of agency when I have had little over my body. It has connected me with a new community and allows me to tell my own stories in my own way. I get to curate my own narratives, outside of those created for me by others in society, and my GP in records and doctors notes. So while I will continue to slowly persist in raising awareness and understanding for little known and poorly understood debilitating and devastating conditions, I also encourage you to keep writing, keep reading, new and different narratives to those so endlessly repeated. There are more interesting stories that come out of these places.

You can also join ME Action UK in their current campaign #TeachMETreatME and send a postcard to your doctor inviting them to attend a free one hour online CPD module on ME/CFS. You can be as creative as you like in writing and making a postcard and there are some useful links with more information on the website here

Take care of yourselves, and thank you for reading.

You can follow and listen as the readings from Moving Mountains are posted online here on this link.

You can find Moving Mountains at your favourite bookshop, online, and in libraries.