A Fibromyalgia Diagnosis Was Not On My 2023 Bingo Card…

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.

Trying To Get Tickets To The ERAS Tour As A Disabled Person

TW: Mentions of ableism, severe depression, suicidal thoughts and ideation.

Us international Taylor Swift fans have been waiting for The ERAS Tour to come and visit us for months and finally, we have dates! (Through some bizarre twist of fate, the announcement, the registration, the extra dates announcement, and the opening of resale tickets all occurred while I was at therapy, so I don’t think it would surprise anyone to learn that I rescheduled the sessions that were booked for the days of the actual ticket sales – thank god for my very understanding therapist).

So the tour is coming – possibly the most exciting event of next year – but before I could be excited about that, the ticket sales had to be navigated. And given how horrific the US sale had been, I was – at the very least – very apprehensive. I hoped that, after the previous fiascos, this sale would be smoother but, having witnessed the anxiety and misery and disappointment, I couldn’t help but worry that this sale would be just as bad, with the added hurdle of trying to get accessible seating.


Having pre-ordered the Midnights album during the period in which it granted you a code for tour dates, I had access to the ticket sales a week earlier than the ticket sales for which you had to register. That was definitely helpful, in some ways at least. In the week leading up to this first sale, my Mum and I spoke to the Wembley accessibility people several times, trying to get the most accurate information about getting tickets through them. My Mum had to actually make the calls since making a phone call is something that is a real struggle for me as an autistic person, especially when the phone call has high stakes or I have anxiety about it (I can handle other forms of communication – I just can’t gather enough information from just a voice to keep up a conversation in real time and the anxiety of screwing up just makes the processing worse and the whole thing snowballs until I become non-verbal or descend into a meltdown). So Mum made the phone calls and we tried to get the clearest picture we could, but the information changed with every call and, on the Friday (with the tickets going on sale on Monday morning), they still weren’t sure of anything. They were really only certain of one thing: they were very, very aware of how high the demand was, part of the reason why they were so reluctant to commit to any of the information they did have. It was very stressful and I spent the weekend consumed with anxiety over whether or not I would be able to get tickets to even one show, having hoped to go a couple of times with different friends and family members. The dread I felt at the thought of not getting to go was paralysing.

Most people don’t seem to understand the intensity of my emotions. Technically, it could be part of being neurodivergent or mentally ill but it’s always just felt like part of me: it’s me, hi, I feel everything at 500%, it’s me. I feel every emotion with my whole body; it’s just always been that way. And people have always been weird about it (especially when it comes to loving Taylor actually – I’ve been mocked and harassed for years for being a fan of hers, often for reasons that completely baffle me). It hurts – and that hurt is very intense too – but I’d always rather love things, regardless of what people say. Taylor and her music (and seeing her live) are and always have been so important to me, getting me through hard times and bringing me such life affirming joy; as hard as it can be, it doesn’t surprise me that the thought of not getting to see her live after waiting so long feels like a lifeline being cut.

Monday morning, I woke up so anxious that I couldn’t eat. I couldn’t do anything. When the time came, when the online queue and phone lines ‘opened,’ Mum rang the accessibility number. It rang and rang until it went through to an automated message before hanging up. We tried again. And again and again and again. We kept getting the same message and we were still calling when the queue moved from the first of the Wembley shows in June to the first of the Wembley shows in August in the early afternoon. We were still calling as the clock inched towards five and the closing of the phone lines. I’d been sitting with Mum, unable to do anything and on the edge of the meltdown all day. I was exhausted, in pain, and swinging between misery and rage, in tears over how awful the experience was. It was (and still is) so desperately distressing that it seemed literally impossible to get a ticket for accessible seating, to access the concerts as a disabled person. It just felt – and feels – like yet another part of the world telling us that we’re not worth the effort, that we don’t matter as much as everyone else. It’s a deeply hopeless feeling. And as if the situation wasn’t hard enough on its own, I’ve been struggling with suicidal thoughts and impulses for a while now and between the dwindling possibility of getting accessible tickets and the crushing display of ableism, those thoughts were only getting louder and more difficult to block out.

Tuesday was more of the same, just with an awful day and awful night’s sleep under my belt. Mum and I were glued to the sofa again, calling over and over and over. Morning turned into afternoon, another show disappearing. Wembley Stadium had tweeted a response to the criticism on social media: “Due to unprecedented demand waiting time for Taylor Swift | The Eras Tour Disabled Access is longer than normal. For those unable to wait on the phone we have a call-back system.” Seeing that filled me with the urge to throw my phone across the room: when we’d spoken to them, the ‘unprecedented demand’ was the only thing they had known about. I wanted to scream.

The night before, a friend had suggested looking at Twitter to see if other disabled fans had posted about having a similar experience. I didn’t remember her suggestion until the afternoon but once I did, I went searching and found my experience repeated over and over. On one hand, it was reassuring because I wasn’t alone but on the other, here was this huge number of people who weren’t able to get tickets because Wembley’s accessibility department wasn’t doing its job. I spent the afternoon tweeting back and forth with this group of people: trying to find a better way, sharing different phone numbers that different people had had success with, updating each other on our progress, sharing the successes and the miseries and frustrations. One fan, Faith Martin (she wrote a great piece for Metro about what the experience was like was disabled fans), spent an amazing amount of time trying to help people get tickets, long after she got tickets for herself; I really appreciated her support and encouragement. (I’m sure there were other fans doing this, helping other fans for other UK venues but Faith is the person I saw doing this, the person who helped me.) Having that little community in such a fraught time was comforting; I’ve never had anything like that before.

Eventually, just before the lines closed for the day, we got through and were finally, finally able to get tickets. When my Mum hung up the phone and triumphantly announced that we had tickets, I collapsed back onto the sofa and burst into tears. I was overwhelmingly relieved but also totally overwhelmed by the exhaustion and anxiety making my hands shake, by the excruciating pain in my limbs, back, neck, and skull. But most of all, I was just completely overwhelmed by how hurt I felt by the ableism of the process (especially compared to the ease of the online general ticket sale), by how little my very existence meant to them even though I was paying them for the space I would be inhabiting. God, you know it’s bad when you’re paying to take up space and still no one cares because of the ‘inconvenience’ you present. I was pleased – of course, I was – but all the other big emotions were drowning it out. I knew I’d be thrilled later on, once I’d recovered from the unbelievable stress of those two days.

And it’s true. It took a couple of weeks to fully return to my day-to-day state but now that I have, I am really, really excited. But having said that – and I know I’ll say it a lot over the next year – I still feel hurt by how Wembley handled it all, how they treated their disabled patrons. I’m hurt and I’m angry and if there was anything I could do that would affect any change, that would be more than me simply shouting into the void, then I’d do it. Without a second thought. But if there is, I have no idea what it would be. So here I am, sharing my experience about, if only to remind people that this sort of thing – and worse, of course, much, much worse – happens every day. Even the processes set up supposedly to help us are failing us, and worse, hurting us.


I’ll leave you with what I tweeted after I got my tickets: “I knew that getting #ErasTour tickets would be hard but I didn’t expect the level of ableism. By making it so much harder for us, they’re essentially telling us that we aren’t as important as everyone else, that we don’t matter as much, and that was deeply, deeply upsetting.”

And here are some of the articles that have been written about this, including the experiences of several disabled fans. (Note: please don’t read the comments sections of these articles because the dismissive, ableist bile coming from people – most of whom are totally missing the point – is honestly painful and there is no reason to subject yourself to that if you don’t have to.)

(1) (2) (3) (4) (5)

Rare Birds, The New Neurodivergent Clothing Line – Review

Several months ago, I got an email with a survey for a new clothing line that prioritises neurodivergent people, known as Rare Birds. They already had plans to make the clothes soft, seamless, without labels, and so on, all things that neurodivergent individuals often struggle with; problems like these can trigger anything from difficulty concentration to full-blown meltdowns. This definitely appealed to me, having struggled with clothing and fabric issues all my life, and I eagerly filled out the first and then the second survey with my preferences, what a clothing line would ideally provide me with. Then, back in July I think, they launched the line and I bought a handful of items, hopeful that I’d find things I loved but also just curious about what they did with the survey results and how that data has translated into the actual clothes.

So here are my thoughts on my order, on the clothes that I bought.


My first impression when I unpacked them (apart from the overwhelming smell of plastic that plumed out of the box – it was so strong it actually gave me a headache and I knew I’d have to wash whatever I kept a handful of times before I could wear them) was that the fabric wasn’t what I’d been hoping for. I’m a 100% cotton girl and the clothes felt more lycra-like, more stretchy and slippery, which didn’t thrill me. But I wasn’t going to be put off just by that; I felt like I had to give them a real chance. First impressions and all that…

So, because I wanted to get a real sense of what the line was like, I’d bought several things (which ended up being pretty expensive but I’ll come back to that later):

Everyday Short-Sleeve T-Shirt (in black) – This big, loose t-shirt is described as “gentle on the skin and super soft to the touch” and in their ThermoSoft range, made of 68% Bamboo, 28% Organic Cotton, and 4% Elastane. It’s reported to be stretchy, durable, super soft, breathable, and thermo-regulating (the bamboo helps to regulate your body temperature, making sure you stay cool when it’s hot and warm when it’s cold). It was comfortable, if not my fabric preference, but not more comfortable than most of the t-shirts I already own and I wouldn’t wear it out; it’s a bit shapeless and I felt kind of frumpy in it.

Everyday Long-Sleeve T-Shirt (in black) – Part of the CloudComfort collection, this soft long-sleeve top is made from 95% Modal (made from beech trees and considered more eco-friendly than cotton) and 5% Elastane. They describe it as ultra soft, durable, lightweight, and breathable. The last part is what I liked most about it: it felt very light and airy, even if the fabric isn’t quite my preference. I think it would be good for summer, especially since I’ve semi-recently developed the compulsive urge to be covered up at all times. It’s a nicer shape than the short-sleeve t-shirt too. It was probably my favourite of the things we bought, although I’m still not sure how comfortable I’d feel wearing it outside the house; it’s not as flattering as I would have liked (and I don’t mean tight – I wouldn’t want it to be tight – I mean in regards to its shape).

Everyday Leggings (in black) – Made of 86% Organic Cotton and 14% Elastane, these leggings from the FlexSoft range (described as blending “the softness of Organic Cotton with the stretchiness of Elastane to create a fabric that maintains its shape with ease while being gentle on the skin”) are supposed to be soft and comfortable (even for the very sensitive skin), stretchy but strong, lightweight, and will retain their shape despite frequent wash and wear. They were strong and supportive but I’m not completely convinced by the shaping of them: the waistband was uncomfortably tight at a strange point of my torso, which was particularly unpleasant when sitting.

Everyday Joggers (in black) – Also in the ThermoSoft range, these thin sweatpants are made of 68% Bamboo, 28% Organic Cotton, and 4% Elastane: stretchy, durable, super soft, breathable, and thermo-regulating. I found them light and thin (not heavy, like the fabric of some sweatpants) and I think they’d be particularly good in the summer but they’re far too like pyjamas to ever wear out. And while I know sweatpants are about comfort and not about looking good, I felt actively unattractive in them, which I think I would struggle with long term. (The idea of Dopamine Dressing is something that I’m intrigued by and want to test out at some point to see if it does improve my mood and confidence and motivation).

DreamSeam Socks (in black) – They were beautifully soft, I have to give them that, made of 75% Bamboo, 23% Polyester, and 2% Elastane, and I love that they don’t have seams (I’ve been wearing my socks inside out for years in order to avoid them) but I couldn’t even bear to open them when I saw how expensive they were (£10 for one pair of socks – when I’d made the order, Mum and I had been talking about it, she’d done it on her laptop, and either she didn’t mention the pricing to me or I missed her telling me). That’s just too expensive (especially in the case of the socks when you can just turn them inside out).

And that was something I wanted to talk about in general. A significant percentage of the neurodivergent population are unemployed for various reasons and so to charge so much for basic items makes them, as far as I can tell, pretty unavailable to the people they’re making them for. I want to support them and I can understand many of the reasons why they may need to cost what they do but I certainly can’t afford it as a general practice. It’s all too expensive for me to base my wardrobe around; they are simple, basic pieces after all and not fashion or statement pieces for which you’d expect to spend more. I want to support them but while they’re this expensive, there’s a limit to what I could buy.

Another general issue that I noticed is that none of the clothes have sizes bigger than XL. Other than excluding anyone who wears sizes bigger than this, it’s not uncommon for neurodivergent people to want their clothes loose to avoid feeling uncomfortable or overstimulated; while it’s true that most of these clothes are roomy, I’d imagine that anyone who’s size L or above and looking for baggy clothes will struggle without bigger sizes. Maybe this is something they’ll introduce over time but I have noticed it while perusing their website.

And on a personal note, I didn’t feel good in pretty much any of it: I felt unattractive and like, to others, as if I hadn’t put any effort into my appearance. I know they’re meant to be the basics but still, they didn’t make me feel good about how I looked or confident in my appearance, which we know is really important when it comes to our mental health, our confidence, our relationships… As I mentioned earlier, the idea of Dopamine Dressing – dressing in a way that boosts your mood, your productivity, your confidence – is real, even if the evidence is still largely anecdotal in the neurodivergent population: if I’m excited about the clothes I’m wearing and how I look, I’m likely to feel more confident and social and motivated because I feel good in myself. I can’t believe I’m the only person who feels this way. That is something I think is lacking here and hopefully will be addressed in the future.


Although I didn’t have a hugely positive experience this time, I think that overall, it’s a really positive thing. Different people want different things so I can hardly be annoyed that it’s not everything I wanted right off the bat; I guess I just hoped that I’d like it more than I do. But as I said, I think it’s a really great venture that I am excited about and will continue to support. It’s brand new and you’ve got to start somewhere; there are so many avenues that they can explore from this point. I’ll be keeping an eye on it to see what they go on to release and whether that is more my thing.