Finding HopeA Fibromyalgia Diagnosis Was Not On My 2023 Bingo Card…
Posted on September 9, 2023
I’ve been trying to write this post for a couple of weeks now but I’ve been finding it difficult to accurately describe my feelings about the whole experience. To cut a long story short, I have been diagnosed with Fibromyalgia (on top of the Hypermobile Ehlers-Danlos Syndrome and Chronic Fatigue Syndrome) but, given my traumatic history with doctors and the medical system, it’s left me feeling shaken up and vulnerable…
Several weeks ago, I went to the hospital for an appointment with the Rheumatology Department. It was my annual follow up, post my diagnosis and then confirmation of Hypermobile Ehlers-Danlos Syndrome, despite it being a different hospital, a different doctor, and having had no support for it since the diagnosis. I was, let’s say, perplexed by the purpose of the appointment, given the lack of contact with them but apparently the appointment was important to insure that I wasn’t discharged from the system; I’m not entirely sure how being in the system is helpful (given the lack of contact and support) but I wearily (and warily – I’ve had so many traumatic experiences at the hands of medical professional that just walking through the door can trigger a panic attack or a meltdown) agreed to go.
I’m not sure the doctor knew exactly what the purpose of the appointment was either because he meandered through a series of questions without an apparent destination. But when he asked about pain and I described the ebb and flow of the chronic pain I live with day-to-day, he started talking about Fibromyalgia, whether I’d heard of it, and whether I’d ever been assessed for it. I told him that I had been and wasn’t found to have it, a snarky comment – “I thought doctors didn’t believe in Fibromyalgia” – slipping out. Over the last decade or so, my apprehension (read: trauma response and resulting severe anxiety) in medical situations tends to manifest either as becoming non-verbal or triggers a snarky, provocative attitude (depending, I think, on whether I’m more upset or angry – what determines that, I’m not really sure). That day, apparently, the snark was winning out. I don’t particularly like this about myself but the emotions are always so overwhelming that I feel about as in control of it as I do the non-verbal periods – as in, not at all. My therapist and I are talking about it but sixteen years of traumatic experiences aren’t going to be solved in a handful of sessions. Fortunately the doctor didn’t seem offended.
He asked me to fill out a couple of questionnaires and I scored ridiculously high on both of them, indicating Fibromyalgia. He asked me a few more questions and then had me lie on the gurney, pressing on the Fibromyalgia Tender Points and rotating various joints. To his credit, he told me exactly what he was going to do before he did it – with the explicit option to say no – and he was as careful and gentle as was probably possible while still learning was he needed to. Usually an appointment that involves a medical professional touching me ends in emotional disaster (panic attacks, meltdowns, etc) and while there’s no world in which I could describe myself as relaxed during the exam, it didn’t end in tears, literally or figuratively. He also carefully examined my hands, given how much pain I have in them. He couldn’t find anything specific but acknowledged that that didn’t mean there wasn’t a problem and said he’d arrange an ultrasound to be sure. That surprised me; in my experience, most doctors stop at not finding a problem. I don’t think I’ve ever had a doctor run tests ‘to be sure.’
He diagnosed me with Fibromyalgia (my thoughts on that in a moment) and ran through the (limited) available options. He listed various medications to manage the pain, none of which I can take due to previous bad reactions or because they’re contraindicated with my anti-depressants; he said he’d look into some funding for more hydrotherapy since the NHS only gives you maximum two, although I’d be very surprised if he managed that; and he said he’d refer me to an inpatient centre that specifically takes people with hEDS (but just the thought of the inpatient format makes me very anxious, unsurprising as an autistic person who finds change difficult to say the least). So I don’t feel particularly convinced by any of that but I have to give him credit for trying; I don’t usually get even that.
So, according to at least five different doctors, I have Chronic Fatigue Syndrome, Chronic Pain, Hypermobile Ehlers-Danlos Syndrome, and now Fibromyalgia. These conditions can and do exist together but I remain unconvinced that I have all of these conditions when so many of the same symptoms occur in all or multiple conditions, such as pain (in both joints and muscle), muscle stiffness and/or weakness, severe fatigue, difficulty sleeping, difficulty with concentration and memory, headaches, heart rate irregularities, dizziness, and low mood. I feel reasonably sure about the hEDS – given the joint hypermobility and instability, as well as the autonomic dysfunction, the postural tachycardia (and the connection with neurodiversity makes for an even stronger case) – and I definitely struggle with something or some things that involve severe pain and severe fatigue, but I don’t know how to be sure which diagnosis or diagnoses those fall under. In an ideal world, I’d be able to trust these doctors and the diagnoses they bestow upon me, even if the number of them and the overlap of symptoms feels unlikely (to my admittedly untrained eye). But my experience and the trauma I live with as a result of how medical professionals have treated me, reinforced by the all but unanimous lack of support, has left me unable to trust them and trust them with something as precious and fragile as my health, physical and mental. So I find it very, very hard to take any of them at their word and then to believe that they’ll do what they say they’ll do; I’ve long stopped having expectations.
Even though I remain skeptical about the Fibromyalgia diagnosis and the options I’ve been presented with, I was reassured a little when the doctor asked if I’d mind having a series of blood tests done (including ones for thyroid function, liver function, and cortisol) and more so when he was happy to include a couple more – ones relating to my ADHD – that I’d been waiting to ask my GP about; I was more than a little taken aback that he was listening and willing to help, even though it wasn’t a part of his job. I was surprised again when he rang to check whether there were any problems because he was still waiting on the results (I’d had to postpone the tests when I was felled by an ear infection); that’s a diligence I’ve seen so rarely that I could probably count the occasions on one hand. So I am grateful for that, even though I find it unsettling, even though the whole thing was very stressful.
A new diagnosis (and yet more time in medical establishments with medical professionals) isn’t a road I wanted to go down and the confusion and internal conflict over how Fibromyalgia fits into the picture (especially since I’ve been told in the past that I don’t have it, making the whole thing even more confusing) have been really draining; my anxiety has been running high, especially around medical stuff (which made going to the doctor for the aforementioned ear infection a difficult and distressing experience). I’ve been talking to my therapist a lot about these experiences (more on this in a separate post, I think) but, given how long this traumatic cycle has been going on, it’s not something that I can simply deep breathe my way through. No, it’s going to take rather more than that, I think.
Breathing Room by Anna Berry
Posted on September 3, 2023
I first discovered Breathing Room by Anna Berry in early 2021 when I was researching autistic artists for the final project of my MA. I was writing an album on my experience of being an autistic woman and the assessment criteria specified that I needed to research other songwriters in the field but, unsurprisingly, there are very few songwriters in general (let alone female singersongwriters) who have talked about being autistic, who have even revealed that they’re autistic. When I brought that up to my supervisor, she suggested looking at female autistic poets, writers, dancers, artists – to look at it from a broader artistic perspective, as long as I made a point that I’d been unable to find enough autistic songwriters for my research. It was in that process that I discovered Anna Berry and Breathing Room. I saw one picture of the original installation and I was in love.
It’s been quite a journey since then so I thought I’d share this beautiful piece of art with you all, along with my personal experience of it and some of what the artist herself has said about it.
The first iteration of Breathing Room was created in 2014: a site-specific kinetic installation commissioned by MK Fringe in TheCentreMK…
“Ownership of public space was the fringe theme, and I wanted to comment on the hard line between commercial and non-commercial space in Milton Keynes. I got as much breadth of Milton Keynes community as possible to donate their waste paper, from which I constructed a living, breathing representation of the community, recolonizing the commercial space. We had donations from all sorts of charities, civic bodies, interest groups, and individuals, including copies of degree certificates, and old school work!” – Anna Berry (x)
And this video gives you a sense of what it’s like to walk around in…
This was the version that I first discovered and I was just fascinated. I loved the cones and how they looked like petals; I loved the movement of it and how it looked like it was breathing, like it a living thing; I loved the not-quite-white gradient of colour, from yellow to white to purple, making it look even more like a living thing, like a flowering creeper plant, not unlike wisteria.
When this installation ended, the piece took on a new form: “This piece has evolved into a different beast, thanks to an Unlimited RnD Commission.” The shape changed into that of a tunnel, enabling it to work as a standalone and transportable installation; this makes it a great fit for festivals and such and means that more people can experience it.
From Anna Berry’s Instagram account (x)
It’s just as beautiful this way and it’s easy to stay tucked into one of the corners, watching the cones shiver and listening to the mechanical clanking of the apparatus.
“Breathing Room is an immersive installation designed to change the way we experience space around us on a primal level. It is a kinetic light installation in the form of a tunnel, lined with cones that ‘breathe.’ The experience is strange and otherworldly – some find it alters consciousness, others have even been moved to tears… The brightly lit outside is a skeletal armature with a visible slightly-tortuous movement mechanism. This contrasts with the inside, which bathes you in soft luminous light, and moves organically – breathing and blossoming. Having already seen the mechanism, this creates a sense of the uncanny. The immersion in the distinctive movement of the cones is unlike any other sensory experience, and this can feel profound… Breathing Room is hard to convey on screen, because its immersive and experiential nature works on a more primitive level than language can access, whilst visually, the experience hinges on the differential between your visual periphery versus where you are looking.” (x)
This is a really great video with Anna explaining how all of the parts work, the theory behind it, and people’s reactions to it, among other things…
And I always enjoy hearing artists talk about their art…
“A lot of my practice involves long repetitive making of things, which is quite kind of therapeutic and performative. It’s quite characteristic for me to work a lot with cones and they’re really frustrating. I do a massive cone piece and I’m rolling tens of thousands of these things and then I never want to see another cone for, like, a year and then… I need to do cones again and the draw just, you know, pulls me back. They’re really impossible to work with and the geometry of them is difficult and kind of challenging but always kind of exciting so, yeah, I come back to them again and again.”
I find her repeated returnings to cones really interesting and ended up reading through her website (and various articles) to see if I could find out what drew her to them. In one of her artist statements, An Alternative Statement, she wrote: “I work in a variety of media, but am most known (amongst the very few to whom I am known) for paper interventions. They are fragile and ephemeral, and rely on photographic recording. The practice of making them verges on the performative because of the very repetitive and lengthy nature of the making (particularly in comparison to the short-lived result) as well as the sometimes absurd difficulty of placing the paper in the environment. They inhabit a hinterland between installation, performance, and photography.” That kind of reminds me of music in the sense that you can’t truly capture it in any other form in which it exists; they’re in the present in a way that so many forms of art aren’t, which can be both fascinating and infuriating.
I wrote about this in an earlier post but I can’t post about Breathing Room without including my own experience of it…
I’ve wanted to see it in person ever since I discovered it but the closest it had ever come was Bristol and so I was just waiting semi-patiently for it to come further south. And then, in July this year, I saw on social media that it was coming to London and, not only that, you could volunteer to help get it set up before it opened to the public. Despite my back injury at the time (with the accompanying pain and limited mobility), I signed up, absolutely out-of-my-mind excited about the whole thing. It was a really hot day, I got a very stupid looking (and unfortunately long-lasting) sunburn, and my back hurt like hell for days but it was worth every second: it was such a cool experience. The work was definitive and meditative and it felt so special to be contributing to this big, beautiful piece, to something that people find so moving (myself included). Even walking through the half-constructed tunnel was a poignant experience.
I also got to meet Anna herself, which was really special. She was really lovely and we talked about how I’d researched it for my MA and potential ideas for creating a song about it. I would love to do that; I’d just have to decide on an idea for the song first because there are so many potential avenues it could go down. So that was just the cherry on top of a really great experience.
I would’ve loved to have stayed for another shift but I knew that I physically couldn’t handle it and besides, I had somewhere to be that evening. But, at the weekend, I went back to see it in all its glory. And it was glorious. It was an awesome experience, even more special than I could’ve hoped for. Walking up and down inside it, the only one there, was like stepping into another world; it was magical. After a while, I just sat in one of the corners, watching it ‘breathe.’ It’s just unlike anything else I’ve ever seen, ever experienced. I didn’t want to leave; I wanted to live in it. I never wanted the feeling I felt sitting there – whatever it was – to fade or disappear. As I watched the cones quiver, like petals or leaves in the lightest breeze, I swear I could feel the song ideas unspooling in my mind, like balls of string unrolling across the floor; I couldn’t figure out which one to chase first.
If I could have, I would’ve sat there for hours, just soaking it in and letting my thoughts wander; I’ve never been much of a meditator but I think I could’ve made it work sitting there. There was just something so profound about being in that space, something that touched your soul (although it seems that it moves everyone differently). Having said all of that, between my physical limitations and my other time commitments, it wasn’t possible to just stay indefinitely so I did eventually – reluctantly – drag myself out and leave. It was unexpectedly hard, like I was leaving something important behind. I wish I could explain where all of these feelings come from – what they even are – but I don’t think I can, even if I had endless time and endless words. I think that sometimes art is like that: it affects us in ways that we don’t even know how to characterise. I guess it has to be enough to know that it does and really feel them while you’re feeling them.
As thrilled as I am to have finally seen it and as lucky as I feel to have had that experience, I have to confess that I would love to see it again. And fortunately, it’s on right now as part of Liberty Festival 2023 (within This Is Croydon) so you can be sure that I’m going to get there, one way or another.
Finding Hope 