M.E. Awareness: “I’ve Always Been Here”

A young white woman looks to the side of the frame.

Below, I will be sharing my M.E. awareness campaign from May 2021. ‘Invisible Disabilities Awareness Week’ felt like an appropriate time to share this curation of my Instagram posts, along with additional photographs and thoughts I didn’t share a few months ago.

[A brief visual description: This post contains a series of photos of Sakara sitting on her bed, holding up signs with the statements quoted in the text (like “where were you”), written on them in strong bubble writing. “I’ve always been here” is written on her chest in pale brown, her skin is white and she wears a warm, purple-brown vest top.]

Click play above for an audio version of this post.

M.E. is a debilitating neurological condition which is misunderstood, misrepresented and often mistreated. It’s difficult (if not impossible) for sufferers to access the support we need. Not only in terms of health care and treatments but also eligibility for benefits, workplace/educational adjustments and care provisions. My love goes out to the millions of people trying to live with this condition, my questions go out to all of those who haven’t helped us.

Handwritten signs are laying down, overlapping each other on a flat surface.

Awareness weeks, they are times when we are asked to account for our whereabouts: how long have we been sick? What do our lives look like now? What kind of life are we missing out on? I made these signs to turn the questioning around:

We’ve told our stories, time after time. What’s yours?

Sakara sits on her bed with the "where were you?" sign in her hands.

“Where were you?”

The people in power, the unsupportive families, politicians who debated us in parliament two years ago now, and haven’t seemed to speak out since.

Sakara is now holding a sign asking "where are the funding and research leading to treatment?"

“Where are the funding and research leading to treatment?”

Why are there no replacements for harmful GET (Graded Exercise Therapy) and CBT (Cognitive Behavioural Therapy) approaches? I can’t thank you for removing those guidelines when their replacements are pitiful, often non-existent. Since May, the release of new NICE guidelines on how to handle M.E. were delayed at short notice, leading to more confusion and harm in our community. I’m not the most knowledgable person on these developments, though I do know there were some objections made to the proposed guidelines, but I’ve had to skim over the updates for the sake of my own mental health. That’s how much the politics of these decisions affects people, even before they directly influence our treatment.

Sakara is raising her eyebrows and smirking slightly, holding a sign asking "where is our personal independence?"

“Where is our “personal independence”?”

If you can’t currently treat us, where is the support to help us live these lives? The mental health support, the respite and counselling for us and our carers (often family members), the welfare payments that could make independent living feasible. Why are so many of us not eligible for that small “personal independence payment” you do sometimes provide? I’m fortunate to have somewhere to live, a home, food and care provided by my parents. A large proportion of my PIP payments go towards funding these things, but if I wanted to set out entirely alone? I couldn’t afford it. Not only because of the financial difficulty, but the caring impossibilities. There are people who make it work. But right now, having to navigate a confusing and hostile care system that lacks funding would be a disaster for my mental health, let alone my physical wellbeing.

A close up image of the top of Sakara's bed, a headboard covered in a checked blanket is visible, along with a white quilt and screwed up colourful shirt. Her bedside table has medication and a wave noise player on it.

On the subject of mental health: again, where is our support? I’ve received counselling from a local organisation who help young people, but… A large part of me believes this is too little, too late and being provided by the wrong place. These services need to be there, in the mainstream, from the start. As a child, nobody asked me how I was without having an agenda. Mental health was a threat. Any mention of anxiety or depression felt like the end to any hope I had left of being taken seriously as a physically ill patient. Mental and physical health are not things to be pitted against one another. Even in our own awareness raising we link the concepts of our condition being real with it being physical. These things are both true, but the link is not a direct one. The way we have been treated and spoken to by professionals establishes them as synonymous. “You should see a psychiatrist,” starts to sound a lot like “It’s all in your head,” and that means you’re lying. This serves no-one. Somebody with school anxiety is no more a liar than somebody with M.E., we just require different treatments and approaches. And believe me, the way we are treated is enough to cause and exacerbate mental health difficulties, on top of the physical conditions we’re supposed to be being treated for.

Sakara holds forward another sign asking where our vaccinations are.

“Where are our vaccinations?”

Even as long covid hints at answers to my earlier question on research and funding, we are #LeftOffTheList (that being the list of “Shielding” or Clinically Vulnerable people), not explicitly referenced as a priority and therefore having our vulnerable status subject to the will of individual GPs (I have been vaccinated, but the fact that it wasn’t a given- that it was through luck of having an understanding GP -will never sit well with me). Forgive us for not believing a shift of attitude is a foregone conclusion now.

Since speaking about vaccinations in M.E. awareness week, most age groups have become eligible regardless of vulnerable status. In addition to things opening up and the recent ending of the shielding program in the UK, we now have twin worries: the future availability of booster jabs, and the difficulties faced by those who are unable to take up the vaccine, for medical reasons not acknowledged by their healthcare professionals. If it wasn’t for the private treatment and advice I’ve received, I wouldn’t have been confident in getting the vaccine with a weakened body. Even with my improved physical state I’ve noticed worsened symptoms since taking it (especially around my period). Our concerns are genuine and based in reality. However, I don’t regret my decision and would accept a booster dose if offered one in future.

Photo of the "where were you?" sign laying on the bed near two pillows.

Speaking of long covid and hopes of change, yes combined research offers a path to this, but in terms of respect from medical professionals? We’re already seeing large numbers of long covid (AKA post viral fatigue, in other words a form of ME) paitents sharing experiences on social media of feeling dismissed and misunderstood by doctors, offering misguided advice about the way pacing works, as well as suggestions of graded exercise therapy; which is known to be harmful for sufferers of many chronic conditions.

Sakara holds another sign asking two questions: where is the belief and where is the action?

“Where is the belief? Where is the action?”

There are some who believe us, who share our messages and who speak for us on occasion. But as with that debate in parliament, what are these words -these moments of belief- without tangible action?

A final photograph to end the official sign series, Sakara is once again holding the "where were you" sign.

“I’ve always been here. Where were you?”

Where is our support? Where is the long term, structural change to how medical systems treat us? Why do we still need organisations like The Tymes Trust advocating for young M.E. sufferers and defending parents in court, in cases over whether their children will be taken away from them? Why are Long Covid sufferers facing the same hurdles we’ve always been up against? And why does it still feel so lonely everywhere but my favourite corners of chronic illness and disability social media communities? Why are we denied treatment, only to try and get on with our lives in a world which isn’t built to support us?

Sakara looks to the side, her facial muscles are tired so her mouth droops.

Back in May, I know many people found ME awareness month a struggle, myself included. For me the saving graces were art and community, as they often are. I particularly admired @wordsasmedicine art (especially the collages, the meaning behind each piece is always spot on & so creatively expressed) and I couldn’t be more appreciative of the @teapartyform.e fundraising by the wonderful Anna, who every year hosts an event which brings joy, cake and funding to our community, we couldn’t ask for more.

Picture of Sakara organising pieces of paper on her lap between photographs.

Since then, I’ve become an active member of the M.E. Association’s Champion Bloggers group, they share a wide range of articles and creative pieces by M.E. sufferers to their social media channels and seasonal member’s magazine. It gives me hope to see a charity supporting our creativity, and providing space for us to represent ourselves and tell our own stories. You can find a list of their bloggers by clicking here.

Next year, my plans for M.E. awareness (and all other awareness-raising efforts) are a little different, and a lot exciting. This year felt rather different too, with taking a stronger, more openly defiant approach in the things I was saying. After the widespread support I received from everyone on this series, I’m excited to find out what you make of my future efforts, and even more excited to be surprised and moved by yours. But most importantly, I want us to always keep in mind our own humanity, to prioritise our own well-being when nobody else seems to. As much as I love a creative campaign post, I love the individuals behind them more.

Until next time, look after yourselves.

With love, Sakara.

One final photo of Sakara looking into the camera, not holding a sign but still with "I've always been here" written across her chest.

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