Posted on July 8, 2023
After the Hypermobile Ehlers-Danlos Syndrome diagnosis, one of my many referrals was to the Pain Clinic (something I didn’t know existed). At that point, I’d been in pain for about eight months and the fact that this thing even existed had me feeling optimistic for the first time in ages. But then the weeks started passing and that feeling faded. In that time, I believe there were a number of other referrals from the Physiotherapy and Occupational Therapy services so I don’t know how many times they actually had requests about me but someone finally got in touch five months after the initial referral.
This post spans from May 2021 to April 2022.
MAY 2021
The initial contact was over the phone. We got a call from one of the Pain Clinic team and we had a long conversation; we were on the phone for an hour. She asked me loads of questions and got a detailed history; she also talked me through what the Pain Clinic does and what they can provide. She went away to go over the notes she’d made and figure out what a good next step would be and we had a chance to think about what might be the right path for me.
JULY 2021
Seven weeks after the first call, we got a second call from a different woman; apparently she had a different background to the first woman we’d spoken with and had a load of different questions. We spent another hour on the phone and before we hung up, she told us that she would be taking her notes to the team (which is made up of a group of different clinicians and therapists) and that they would get back to me with their suggestions.
Two weeks later, she called back and, after some discussion, we decided that seeing a pain psychologist was the best way forward – understanding pain, understanding chronic pain, figuring out the triggers, learning how to manage it, and so on – and she set up the first of the six sessions.
AUGUST 2021
The first session was an hour long video call. We’d somehow missed the information packet that the pain psychologist had sent but she was kind enough to go through a lot of the information – a basic understanding of pain – during the session. It was okay but it was very focussed on managing pain, which felt incredibly frustrating: I was fine until May 2020 and then suddenly I was in pain and at no point had anyone stopped and asked why and I want to know why. But no one seems interested in figuring out the why. I got very upset: I spend my whole life just managing things. I don’t even really feel like a person anymore, just a collection of problems that need managing that leave me no space or energy for actually living. The call ended in tears with me curled up in a depressed ball on the sofa.
Given how much the appointment had taken out of me, we decided that it was just too much while I was in the final stretch of my Masters, which the psychologist was really supportive of, and we arranged to start again when it was over so that I could really make the most of the sessions.
OCTOBER 2021
I had my second session five weeks after I finished my Masters (I was completely exhausted from the final semester and, with my Granny’s death, it took me a while to find my feet again). It was mostly a catch up about how my pain had been since the first session; we talked about how constant it had been (just sometimes better, sometimes worse), how it doesn’t seem to be triggered by anything specific. I got so distressed just talking about it that the psychologist suggested that we talk to the advanced practitioner for more insight into hEDS related pain. She said she’d talk to their team and recommended I talk to my GP about a better pain medication. We, again, agreed to pause the sessions until we had some clarity on those two things. I still haven’t found a pain medication that works reliably but it wasn’t long before we got a letter for an appointment with the advanced practitioner.
NOVEMBER 2021
At the beginning of November, I had the appointment with the advanced practitioner. In hindsight, it was probably doomed from the start, considering how unwell I was having just started the ADHD meds – I had to stand outside for a good ten minutes trying to get the nausea under control. And then, just because things had to get worse, I got hit by the electric shock like pain in my back right as the appointment was starting; I could barely hear what everyone was saying, the pain was so debilitating.
As it turns out, there had been some sort of confusion or miscommunication because the two doctors were under the impression that they were showing me some physio-like exercises rather than give me guidance about hEDS related pain as I had discussed with the pain psychologist. One of them just kept talking about all of the “ingredients” of pain – like diet, sleep, exercises, medication, levels of anxiety, emotional state, and so on – and after a while, I just couldn’t keep my mouth shut. I was upset, in pain, and feeling so sick; I just couldn’t listen to another person give me vague advice without telling me how to actually apply these things to my life with all of my problems. And, on top of that, I was sick of everyone dodging my questions: why would this pain just start and why is ‘management’ the only thing being talked about? Why is no one interested in finding out why it started and whether it can be fixed? When the pain started, the only thing that had changed was my anxiety over the pandemic and it’s not like I was the only person who was experiencing that. So why did it start? If it can just appear, what’s to say it can’t disappear again if I do the right things (which obviously relies on me knowing what the right things are)?
Eventually this doctor gave me a somewhat murky explanation: that the trauma of the autistic challenges and the anxiety relating to the pandemic, compounded by the de-conditioning of the stabilising muscle in the early months of the pandemic, has resulted in the pain I’ve been experiencing. I’m not convinced by this but it’s the closest thing to an explanation that I’ve received so far. Anyway, they said that they’d take my case to their multi-disciplinary meeting and see what the suggestions were. I’ll take what I can get but I didn’t have a lot of hope: the last time I was in a similar situation, the Chronic Fatigue Service told me my case was too complicated and then just abandoned me. I’ve also had NHS doctors tell me that the NHS can’t help me and that I should go private – like that’s the automatic next step. They do know how expensive private healthcare is, right? Particularly if you have a chronic condition? So I did not leave that appointment feeling optimistic.
Later that month, we got a letter informing us that the original referral to the Pain Clinic from December 2020 had just gone through. Eleven months that took. I’m trying to be grateful that one of the other referrals went through faster but it was hard when it felt like we hadn’t made any progress at all.
APRIL 2022
The pain had reduced some by the end of 2021 but it flared up again (mostly in my hips and lower legs) in early February, which was likely exacerbated by my lack of movement while struggling with the effects of the ADHD meds – extreme nausea, depression, insomnia – and therefore not swimming. Things were better for a while – between more daily movement and starting hydrotherapy – but then it flared up again in late April, with awful pain in my elbows, arms, and hands.
When I realised how long this post was getting, I decided to split it up by year (yeah, because the whole process took actual years). This is the first instalment from Spring 2021 to Spring 2022. The next part will be up soon.
Category: adhd, chronic fatigue, chronic pain, covid-19 pandemic, death, diagnosis, emotions, exercise, heds, hydrotherapy, identity, medication, mental health, sleep, therapy, treatment, university Tagged: adhd, adhd medication, advanced practitioner, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, chronic fatigue, chronic fatigue service, chronic pain, covid-19, diagnosis, ehlers danlos syndrome, gp, heds, hypermobile ehlers danlos syndrome, hypermobility, masters, masters degree, nausea, nhs, occupational therapy, pain, pain clinic, pain management, pain medication, pain psychologist, pandemic, pandemic 2020, pandemic anxiety, physiotherapy, private health care, side effects, swimming
Posted on June 18, 2023
I have been a fan of Amanda Tapping – Samantha Carter in Stargate SG-1, Helen Magnus in Sanctuary, actor, director, and more – for years, since I was about fifteen or sixteen (so over a decade). She’s an amazing actor, a fantastic director, a deep and creative thinker, and an incredibly generous person: for years, she did – amongst other things – annual weekend-long charity events, each one raising thousands and thousands of pounds for charity. I’ve always loved her performances, especially as these two characters, (and her commitment to the integrity of the characters) and they had a huge impact on me; even after all these years, there are moments from the shows and from the audio commentaries (that I listened to obsessively) that I see show up in my life and my creative approach. They – and she – really did change my life.
Back in 2016, I had the opportunity to meet her at her annual GABIT event, AT9. This event involved several Q&A sessions when she not only answered questions but told stories from her life and acting experiences. Attendees also got to take photos with her and get her autograph, getting little pockets of time to talk to her. Meeting her was an amazing experience, even if I was so unbelievably nervous that I could barely talk. But she was so sweet, holding my hands the whole time and just pulling me out of myself, making it a little easier. She really is the loveliest human being.
A few weeks ago, I got an email from The Companion, a website focussed on sci-fi media with this goal: “To create the most special, fun, and welcoming place where as a geek, you can be yourself and bring you closer to the creators, actors, experts… and each other. We launched The Companion in October 2020 during lockdown on this shared belief: geeks deserve a high quality home just like fans of sports, fashion, music, and other ‘premium’ genres.” Their think pieces, character and episode analyses, behind the scenes articles and so on are all really interesting and their interviews with so many people involved with these shows are always fascinating and good fun. It’s a great site, even without events like these. Back to said email…
“We’re absolutely thrilled to announce this very special event with Amanda Tapping – and all for a good cause. As one of our cherished Companion members, we wanted you to be the first in line for an opportunity to meet the legendary actor, director, and producer. Join us on June 3rd, 2023, for a live online interview with Amanda Tapping covering a subject close to her heart: mental health. Hear stories of how Stargate fandom saves lives and share some of your own. ‘As part of the sci-fi community, I’ve seen firsthand how we can all come together and support each other,’ says Amanda, ‘and I would like to extend that same compassion and understanding to issues around mental health.’“

So I love Amanda Tapping and mental health is a deeply important cause for me as well so this seemed like a gift from the universe. I bought a ticket straight away. There was also an opportunity to meet her online after the event but, as much as I would’ve liked to, I just felt like it wasn’t right for me. For one thing, it was in a groups for a short period of time and I know I wouldn’t have felt able to say anything I wanted to say with an audience. And it was just too expensive to justify, especially with that context. So I reluctantly clicked away and hoped I’d get another opportunity in the future.
We did, however, have the opportunity to share a story that would be passed on to her and I really liked that idea; it felt much less exposing, even if it did get shared during the livestream. So I wrote about how Sanctuary in particular got me through sixth form when I first started struggling with depression and anxiety; I had this fun little daydream about working on the set, working on the scripts for the show, and I probably spent more time in that world than I did in the real one (I swear, I had multiple cork boards with storylines planned out). I couldn’t have gotten through that period of my life without it, without her.
I really wasn’t sure what to expect from the livestream, how it would go, but it was highly enjoyable despite the emotional nature of it. Everyone was very thoughtful and heartfelt but still funny and ultimately hopeful. I won’t share everything because it was a unique and special experience that we all paid for but there are things that I think no one would mind if I shared because of how they could help people. And I wanted to share the experience of this livestream with someone I love and respect so much.
The first thing Amanda did, after being introduced, was lead everyone through a breathing exercise – breathe in for four, hold for four, out for four, hold for four – that she does with her daughter, Olivia, when she’s feeling “super anxious.” She clarified that she’s not an expert or anything but that she has been through “things” and that she’s maybe, as her daughter has said, a person who “feels things a little too much.” She feels it and she wants to help people who are also feeling it; that was a really nice way of putting it and it was nice to hear. She was pretty emotional from the start, telling us – and there were a lot of us, in the comments and just watching – that she was “really, really grateful that [we were] all [there].”

I hadn’t forgotten how much I love her but seeing her again and hearing her voice, I was just overwhelmed by how much she means to me, how much she’s impacted my life. And I was just so, so pleased to see her. It was just pure, overwhelming joy. And from the look on her face, she felt the same way about being there, about connecting with everyone and being ‘together’ again. It was really sweet. And the first thing she shared felt very typically Amanda: it was the analogy of how we all carry bags of rocks, bags that only grow heavier over time, and how we all need to learn how to put them down now and then, take a breath, and just be, just be a person without that burden: “We all have our burdens but I think it’s really important to take a moment and put it down and just see what it feels like to not carry it around for a minute.” We’ll always carry those burdens and they help us to help other people but we need to look after ourselves too.
There was some significant discussion about COVID, both how she’d seen it affect other people (even in the way that people are driving more aggressively) and how she felt it had affected her. She talked quite a bit about her experience – about her family, about her fears, about her losses – more so than I would’ve expected. She’d felt isolated and scared and didn’t understand what was happening and why it was still going on; she had a lot of anxiety, especially watching her daughter go to high school in a mask every day (once schools opened again). And while it was, of course, so important to wear a mask, she talked about how hard it was to breathe with a mask and face shield for fourteen hours a day on a film set, getting home and feeling oxygen deprived. “It was easy to fall into isolation,” she said, “It was easy to go down the rabbit hole as I so often do,” and it took a while for her friends to pull her out of that. It’s amazingly comforting to hear someone you so admire and respect express the same feelings as you. It made me quite emotional to hear and even more so to think about what she was really sharing with us: these really personal details of her life. I’m always so touched when people, especially people like her with public profiles, share such personal details and trust us with them; it feels like an honour, a trust that feels really sacred.
Rebecca, the livestream host, asked her what had helped her that might help others and Amanda talked about several things, all good points and interesting insights into her life:
Back to the stories for a moment. As I said, a handful of the stories submitted were shared over the course of the livestream. (Mine wasn’t one of them – I think it was probably too long and also didn’t serve as a jumping off point for more questions – but that was fine; they’re all being passed on to her so she will see it. That’s good enough for me. Apparently they were all really uplifting and just amazing examples of this fandom, that they reflect a deeply inspiring reality of how these fandoms have been so much more than just sources of entertainment for so many people: how they’ve provided solace, a sense of belonging, and even lifelines in the worst times, a description that was really moving to me.) There were lots of people saying that she and her work as various characters have saved their lives and you could see how much that meant to her. At one point, she used the word ‘verklempt’ (a word I’d never heard before but which means ‘overcome with emotion’ and you could really see that she was). One of the stories talked about fandom really well and what it means to people and Amanda was really taken with the description…

“Wow, that’s beautiful put. Holy moly. And it’s true. I don’t know if I can add to that, that’s just very beautifully articulate.”
Rebecca talked about how, in researching for the stream, she found articles about how sci-fi and how the escapism it provides can be bad for your mental health and found that very surprising. That had surprised her because she’s personally always used sci-fi to get more in touch with the world around her. Amanda completely agreed and they talked about how that idea bothered them both – that the escapism of sci-fi is a bad thing – and why. Amanda talked about how sci-fi is so often maligned and characterised as the ‘geeky’ genre; I find it so heartening to know that she’s always been able to see what it could be. She talked about how she doesn’t think you can escape too far, that being able to escape is important: we can escape into the thing and then, through the internet, we can connect with people all over the world. A lot of people just don’t get that. And following on from that, she talked about how, in her experience, the Stargate fandom is full of really nice people and the Sanctuary fans were always so generous and kind, how she constantly sees fans supporting each other, online and in real life, and how fiercely they wanted to help with her charity, Sanctuary For Kids. She said that she’s observed a special and unique generosity from sci-fi fans, perhaps because so many people feel seen by the characters and shows in this genre.

She talked about how hearing people’s stories means so much to her, how it’s had such a big impact on her. Apparently her favourite stories are the ones about what the characters mean to people and how those connections have made them feel stronger (she mimed hugging everyone, which was really cute). The number of stories like that was really moving but there were also so many stories about how people felt that Amanda herself had saved them and Rebecca asked her what that felt like. You could see how deeply that moved her – continues to move her – and she sniffed so I think it had actually moved her to tears. She could see how much Sam Carter meant to all of these people, especially young women and that felt like a huge sense of responsibility, that Carter was – and still is – this huge role model. She felt like she couldn’t let the show screw up her story so she would fight the writers on certain decisions despite not being a confrontational person. She’s talked about that a lot and it always makes me think how lucky we all were to have Amanda Tapping cast as Samantha Carter because someone else might not have pushed so hard for the character and for the audience.
The final story described Amanda as being “a light in the darkness” and she was clearly quite overwhelmed by that (something that I found both surprising and really touching, considering how often she must’ve seen messages like this over the years): “Wow, um, the only thing I can say to that is that, um, it works both ways and that, in my hours of darkness, the fandom has helped me see the light and feel okay. It’s not that you’re just helping each other, you’ve certainly helped me and I know a lot of other actors who go, ‘Oh, like, people do care and people do like us…’ And, for me, I…. It’s really important to me to connect to fans when I meet them… It’s given me a whole other world of experience. But it does, it goes both ways. It absolutely goes both ways. I’ve been lifted up out of fires more than you guys could possibly know, by your kindness and your generosity and your love.” She was visibly emotional again and I was practically weeping. It’s easy to think that we, as individuals, don’t affect her but clearly we do and that’s a lot of feeling that I’m not entirely sure what to do with.
Eventually they wrapped up the livestream and Amanda wished us all goodbye: “I love you all and it’s been a real honour to be a part of this fandom. It’s been such a huge gift in my life so thank you.” She blew us a kiss and then it was over. It was moving and thoughtful and considerate and generous and a really lovely experience. I really hope that they do do more of these conversations – Amanda said that she wants to revisit all of this, how this is just the start, just scratching the surface of a very big conversation – because it was very inspiring and I think they really could do good, even if none of us know what that looks like yet.
It was a lovely hour and I really hope that they continue to do these discussions. And seeing Amanda on my screen again, hearing her talk about all of these things that are so important to all of us, I would so love to see her again. I would have reversed my decision on the post stream meet and greet sessions on the spot. She’s visiting London for London Film and Comic Con in July and I’ve been going back and forth about going for months, even more so after the livestream. I would love to meet her again – so much has changed since the last time I saw her (not that I’d be filling her in on everything but I feel different and this me would like to meet her) – but conventions feel so scary and overwhelming, overstimulating on every level. But then I got an email that she was doing a talk too and, after a long conversation with my Mum, I’ve decided to try. There are other cool people there but I’m not going to try and take on too much, just going to Amanda’s talk and meeting her. Hopefully I will be able to handle it – the noise, the people, the anxiety – and have a good time; the tickets have been purchased and now I guess we just have to wait and see.
Category: anxiety, covid-19 pandemic, emotions, family, favourites, mental health, quotes, special interests, tips Tagged: actor, advice, amanda tapping, anxiety, at9, charity, charity work, connection, covid, covid-19, directing, director, face shield, family, fandom, friendship, gabit, helen magnus, hero, idol, lfcc, lfcc 2023, livestream, london film and comic con, martin wood, mask, masking, mental health, pandemic, pandemic 2020, role model, sam carter, samantha carter, sanctuary, sci-fi, social media, stargate sg-1, stargate sg1, the companion, tips, tv shows, zoom
Posted on May 5, 2023
Today I posted a new video on Youtube, talking about the inspiration and process behind the writing of my newest single, ‘House on Fire.’ I posted it on all of my social media accounts but I also wanted to post it here because I put so much of myself into this song. Both my initial inspiration for the song and the interpretation that has evolved over time mean so much to me and it means a lot to me to share it all in more detail. I just felt like you guys might connect with these stories, as well as the song.
If you haven’t listened to the song yet, you can find it here and I’ll be releasing more stuff soon. I hope you like the song, I hope it makes you feel something, and I hope it’s been interesting to hear the story behind the writing of the song, some of the behind the scenes of the creative process.
As always, thank you for listening to my songs, watching my videos, and reading my posts. It means more than I can say.
EDIT: You can now watch the behind the scenes of making this video, where I rambled, tripped over my own tongue, and accidentally advertised Red Bull! Enjoy! (x)
Category: anxiety, covid-19 pandemic, emotions, mental health, music, special interests, video, writing Tagged: actuallyautistic, alt pop, alternative pop, anxiety, asd, autism, autism spectrum disorder, autistic, autistic artist, autistic creative, autistic creator, conservatives, coronavirus, covid, covid-19, fear, house on fire, independent artist, independent release, indie artist, indie pop, indie release, lauren alex hooper, mental health, music, my music, new music, new music uk, new single, pandemic, pandemic 2020, politics, pop music, protest song, richard marc, richard marc music, singer, singer songwriter, singersongwriter, songwriter, the conservative party, tories, unsigned, unsigned artist

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