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.
Category: adhd, anxiety, autism, chronic fatigue, chronic pain, diagnosis, emotions, heds, hydrotherapy, meltdowns, mental health, pots, therapy Tagged: anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, cfs, chronic fatigue, chronic fatigue syndrome, chronic illness, chronic pain, comorbid conditions, comorbidity, cptsd, diagnosis, diagnostic process, ehlers danlos syndrome, fibromyalgia, heds, hydrotherapy, hypermobile ehlers danlos syndrome, medical trauma, new diagnosis, stress, therapy, trauma, trauma response, treatment
Posted on August 27, 2023
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.)
Category: about me, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, family, heds, meltdowns, mental health, music, special interests, suicide Tagged: ableism, ableist, accessibility, accessible seating, anxiety, asc, asd, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, bullying, carer, carer's ticket, chronic fatigue, chronic fatigue syndrome, chronic pain, companion ticket, concert, depression, disability, disabled, disabled access, eds, ehlers danlos syndrome, emotional rollercoaster, enjoyment, eras tour, eras tour 2024, eras tour london, exhaustion, fan, fans, fatigue, fibromyalgia, fun, heds, hypermobile ehlers danlos syndrome, institutional ableism, joy, live music, mental illness, mum, music, pain, phone calls, recovery, rest, safety, special interest, stress, suicidal ideation, suicidal thoughts, swifties, taylor swift, tension, therapy, ticket, ticket sales, tickets, twitter, wembley, wembley stadium
Posted on June 3, 2023
TW: Mentions of self harm and Trichotillomania.
So the theme set by the Mental Health Foundation for Mental Health Awareness Week this year was anxiety. They pushed the hashtag #ToHelpMyAnxiety to raise awareness but I didn’t see it once on social media so I decided to write a whole blog post on the topic, on what helps my anxiety as well as what I’ve heard from others about what helps them. I ranted recently about how people engage with Mental Health Awareness Week, and awareness days in general, but I do think that sharing coping mechanisms for anxiety is a useful thing to do and a good use of those days.
I live with very severe anxiety, so bad that nothing I do actually banishes it, but I have found certain things that help to manage or reduce it. And I’ve spent a lot of time talking with friends and acquaintances about anxiety, discussing how we all try to cope with it. So I have a lot of tried and tested methods that have all worked for at least one person and therefore will hopefully be useful to at least one of you. If any of these ideas help just one person, then it’s worth the work to compile them. (Some of these have been pulled from my experience as an autistic person but many of them are useful for anxiety so I figured it was worth including them.)
I do think it’s worth mentioning that not all of my coping mechanisms are good, healthy ones. I’m focussing on the healthy ones because those are the ones we should all be aspiring to practice but I felt it would be remiss to not even mention them.
General Tips:


At Home:
Out and About:

Other People’s Tips:
Other notes:
So I hope this has been helpful. Hopefully there are enough ideas here that there’s something for everyone, to try at least. If you’re reading this and struggle with anxiety, I feel for you and I’m in this with you and I hope that you find something to help you manage it. Severe anxiety is not something that we just have to accept, just have to live with. There are ways to make it easier – maybe there are even ways to shed it – and I hope you find them because you deserve to enjoy your life. You deserve to feel everything, not just anxiety.
Category: about me, animals, anxiety, autism, chronic fatigue, chronic pain, exercise, family, favourites, food, hydrotherapy, medication, mental health, music, ocd, self harm, sleep, therapy, tips, trichotillomania, writing Tagged: anxiety, anxiety disorder, anxiety medication, asd, autism, autism spectrum disorder, autistic, autistic adult, breathing, chronic fatigue, chronic illness, chronic pain, coping mechanism, coping mechanisms, coping skills, diazepam, exercise, gad, generalised anxiety disorder, generalized anxiety disorder, hair pulling, health, mental health, mental health awareness week, mental health awareness week 2023, mental illness, mhaw, relaxation, self care, self harm, self harming, sensory issues, sensory overload, sensory overwhelm, sensory sensitivity, stim, stimming, stress, swimming, therapy, tips, trich, trichotillomania

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Finding Hope