Finding HopeWorld Suicide Prevention Day 2023
Posted on September 10, 2023
TW: Discussions of suicidal thoughts, suicidal urges, self harm, and irrational thinking. PLEASE think carefully before reading further if these things may trigger you or cause you distress. Please always put yourself and your mental health first.
This, I think, is the first time I’ve written directly about my experience with suicidal thoughts and urges. I’ve mentioned it in relation to the side effects of medication and written around the edges of it but I don’t think I’ve ever talked about it in such detail. I have omitted certain moments and details since it’s been proven that sharing about plans and methods can lead to further suicides but this is as honest as I can manage, even though it terrifies me. But as hard as it is, I’m sharing these experiences because I think it’s so deeply important for people to understand what it’s like to feel this way, to live in so much pain, to feel so desperate. Keeping these stories in the dark only increases the shame and stigma so, even though it’s difficult and uncomfortable and scary, we need to talk about them. It’s the only way the world will get better at supporting people who are struggling.
I’ve experienced suicidal thoughts on and off since I was a teenager but for a long time, they were passive. Walking to school, I’d cross the road and, dreading the day ahead, I’d imagine getting hit by a car. But the thought would leave as quickly as it arrived. I thought it was normal. To quote Ned Vizzini, “Who hasn’t thought about killing themselves, as a kid? How can you grow up in this world and not think about it?” (I may have hated that book but that line really resonated with me.) This was before I was diagnosed as autistic* and I thought everyone felt as overwhelmed by their emotions, by their anxieties, as I did – as I do – but were just better at managing it.
*Autistic individuals, especially autistic women, are at a much higher risk of suicide than the general population; the factors include mental health problems (especially if they go untreated), the impact of a late diagnosis, challenging life events such as bullying and ableism, the burden of masking, isolation, and cognitive inflexibility, which can lead to difficulty in seeing any option but suicide. (x)
(Left: During secondary school // Right: During sixth form college)
I continued to experience passive suicidal thoughts and then, during my second year of sixth form college, I started to struggle with depression and my ever-present anxiety reached all-new heights (although, in comparison to what I experience now, I’d happily go back to it). Almost a decade, multiple diagnoses, and more than twenty medications later, my depression is the worst it’s ever been and I’ve been actively suicidal for almost two years. There have been short periods over the years (always in concert with the times I tried medications other than Phenelzine) where I’ve struggled with suicidal thoughts but, for the last two years, they have been almost constant.
They began in earnest when I started taking Xaggatin for my ADHD (and had to stop taking Phenelzine because my ADHD clinician was insistent that the side effects were unsustainable – I disagreed for multiple reasons but this isn’t the post for that story). I thought the intensity of the thoughts – and their slow, scary manifestation into urges and intentions and plans – was a side effect but it wasn’t long before my depression crept back in, sucking me down. Between that and the other awful side effects, my psychiatrist switched me to another medication, Bupropion, an antidepressant that’s supposed to help with ADHD but it only made things worse: I was so anxious, depressed, and suicidal that I couldn’t function. I tried a few more antidepressants, was traumatised by several more doctors, and had the crisis team called out (although they didn’t do anything, including the things they’d said they’d do). I quit treatment entirely for a while, unable to mentally handle it; I basically retreated to my bed and stayed there. I couldn’t engage with the world: it just hurt too much. But without treatment (I didn’t even have a therapist at this point, another thing that had spun my life out of control), the claws of my depression dug deeper and deeper. I remember one day where I had the sickening realisation that I wasn’t doing anything worthwhile with my life, that I had wasted my time and my education, that I was a complete waste of space. There was another day when I realised that something had broken inside me, something that could never be fixed, and I was no longer the person I had been and would only ever be a defective, inferior version of her. I avoided mirrors for months. On New Year’s Eve of 2021, I stared at the fairy lights in my living room and thought about how I had no desire to survive even the next 365 days. It wasn’t a resolution but I felt it with a quiet certainty. I thought about it everyday but then somehow that dreaded day arrived and I was still here, despite that certainty, despite my plans. I hated myself for it, feeling like a pathetic, weak-willed coward. It was a terrible night, not that I remember much of it given the distress I was in.
Somehow I ended up on Phenelzine again, despite my revulsion at the thought; I still don’t really know how it happened and I still find myself so angry about it that it feels like it might consume me. But, for a while, the chronic suicidality was relocated to the side burner: it was all still there but it wasn’t the only thing in my brain anymore. I could ignore it for sometimes days at a time. But after a while, my depression seemed to billow back in, like ink in water. The suicidal thoughts and urges became – and still are – the constant undertow to my thoughts and sometimes it’s all so overwhelming that I can barely breathe. Self harming has long stopped being an effective coping strategy as it just makes me feel pathetic for not doing more damage. I don’t know why I haven’t acted on these thoughts. I don’t know why I’m still here. If asked, I’d probably say, “because I’m a coward,” even though I know that I’d likely get a verbal thrashing from anyone I voiced that feeling too. I can practically hear my therapist (yes, I’m back in therapy) encouraging me to dissect that feeling. I know it’s not a healthy, rational thought but it is a real one. It’s a weird state to live in and the conflict of planning for a future I don’t particularly want to exist in is disorientating and miserable. It’s exhausting. But I know what my fate is, whether it comes sooner or later, and I have for years.
Following a slightly different train of thought, it’s very strange to me that people can’t seem to tell, just because it’s such an overwhelming experience for me. I feel like I have a massive neon sign over my head: “SUICIDAL.” But then I wouldn’t be surprised if people just don’t comment because they don’t know what to say. The last time I self-harmed, I cut my face because I needed to look as broken as I felt (or inasmuch as I could physically manage, which wasn’t enough – more shame and self-hatred) and almost nobody even mentioned it. (Not that that was the point but it did surprise me. Most of the time I avoided the question. I only lied once: I was in a weird headspace already and the question took me off guard and I just didn’t have the emotional energy to explain.) The cut got infected and took weeks to heal. I’m glad it left a scar but I resent it for not being bigger: the disfigurement doesn’t accurately reflect the feelings, not by a long shot.
(Left: The dressing on my face after I self harmed // Right: The scar after it finally healed, having got infected.)
In some ways, I feel like I’m already disappearing: I struggle to make sense of my face in the mirror and, while I don’t know about this year, there are fewer than ten photos of me in 2022; my autistic masking is so ingrained that the real, brutally honest me who is struggling and suffering (who so desperately needs to be seen) gets locked away so tightly that she might as well not exist, while a socially acceptable and palatable projection of me – the only version of me that people could want, says the voice in my head – takes over my body, acting almost without my permission; I feel like no one knows the real me any more, not after months in bed, besieged by suicidal thoughts and impulses. I feel permanently damaged by it but people are still treating me as who I used to be and not who I am now (not that I think it’s their fault – while the damage feels so deeply clear to me, I know that it’s not visible to anyone else). I remember the old me. I remember the person who could be proud of being different and who advocated for acceptance, even though she still felt broken. It was a balancing act but there was balance. Now the broken feeling has broken the scale. I feel unrecognisable. I noted down somewhere – last year at some point, I think – that feeling like this feels like one elongated near death experience. Almost every day for more than eighteen months, I’ve been so close to death that I can feel it’s presence in the air when I breathe in; I can feel it in my lungs. One decision – one split second – away. Maybe it’s just dying in slow motion. Feeling this way… I don’t know how it doesn’t change you.
I was reading various articles as I both researched and procrastinated this post and, in one of them, the author had written this: “Because depression, as we all know, is almost always treatable.” The statistics vary, depending on where you look, but a high percentage of people (this page claims between 80% and 90%) do eventually respond well to treatment. After ten years, over twenty medications, and more hours in multiple therapies than I can count, I’ve only ever managed periods of being mentally well. The longest period was, I think, two and a half years at the most. Only one medication actually helps and I’ve run out of new ones to try. The other options, according to a consultant in another very distressing appointment, would be the Ketamine trials or Electroconvulsive Therapy, neither of which doctors fully understand (the same could be said for antidepressants). Given how abnormally I respond to multiple medications, I’m terrified of how these treatments might affect me. I’m terrified of how Phenelzine is affecting me. With all of that in mind, I can’t help but wonder – and have wondered for a long time – if I’m included in that small percentage that doesn’t respond to treatment. And if that’s the case, it means that this is forever and that is an unbearable thought.
I’ve spent a lot of time talking with my therapist about this – and no doubt this post will spark multiple new discussions – and we did talk briefly about what I could write for this post, what would feel actually helpful to someone reading (I never figured that out, by the way, so I have no idea if this is helpful or not). She said that the most important thing is to talk about it and that it’s much more dangerous not to talk about it. I agree with the latter part but I’m not convinced that talking about it is helping me; I often feel like I’m just going around in circles and exhausting myself. She asked me what I would say to someone I loved if they expressed all of this to me and the truth is that I honestly don’t know. I don’t know because I’ve never heard anything that’s helped me. I think we all have the knee-jerk reaction to say, “Please stay. I love you and I’d miss you.” It’s true and it’s heartfelt but is it fair to ask someone to live in agony, in unbearable misery, because you’d miss them? We want to say, “Things will get better.” But we don’t know that. We can’t promise that. We want to say, “How can I help?” But it’s unlikely that there’s any one thing a person can do to help, although that one is more specific to the individual person. If someone asked me that, I couldn’t give them an answer because there is nothing they can do to help. It’s so much bigger than one person, than them or than me. Maybe these help some people. For me, none of these things change the reasons I’m suicidal and they’ve only added unhelpful pressure and stress. I’d hate to do that to someone else. I’m not saying the right words aren’t out there. I’ve just never heard them. Or discovered them.
Obviously I haven’t shared everything. As I said, I didn’t want to share things that have been proven to push people passed their limits (although I hope everyone read the warning and acted accordingly and prioritised their mental health) but there are also certain things that are too hard to share, too raw, too loaded. But I wanted to share my experience today, not just because it’s an overwhelming aspect of my life, but because sharing our experiences and our feelings is, as I said in my introduction, one of the few ways (and possibly the most powerful way) that the world gets better at helping people. People can only do that if they understand the battles being fought and the support that’s needed. I hope that sharing my story can help with that, even if it’s just a drop in the ocean.
RESOURCES:
Amanda Tapping: Embracing Mental Health as a Fandom (Livestream)
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:
- She talked about how she and two friends would meet over Zoom every week and have a cocktail hour together. She also did various other Zoom based socialising with other friends, her brothers, her family… The thing that really helped was connecting. (The video connection went out at one point and the screen went dark, which – as Amanda pointed out – was very ironic since there’d been so much talk of connection.) She did talk about how hard that can be though because you know you’ll get a response which you’ll then have to deal with and the whole thing can feel so draining; I can definitely relate to that.
- She also talked about how important it is to share the load with your friends. It is, of course, important to be there for your friends but you also need to let them be there for you. People want to know how you are and they want to help; it can be hard to let them in but it can not only help your mental health but also strengthen your friendship.
- She talked about how exercise makes her feel better and stronger, how it’s taken a long time to feel safe enough to go to the gym again post the height of COVID. She actually talked about having a less than healthy relationship with food during the lockdowns – “Certainly during COVID and everything that went on, I mean, I ate every single feeling I had” and “We ate our feelings, we ate our anxiety, we baked a lot of bread!” – which was very refreshing; so many of us shy away from those conversations but she shared those negative coping mechanisms and how they weren’t good for her and what she did to balance them out: she talked about how it sounds trite but “physical activity is key.” Even if you can’t go for a run, just getting outside is good. She started her day in the woods – her happy place – with Martin Wood (who she’s worked with for years and especially closely on Sanctuary – I cannot express how happy it makes me that they’re still such close friends and hang out regularly), walking their dogs. That was how she got herself mentally prepared for the livestream.
- She said that she’s not good at stopping (somehow this did not surprise me) so she kept moving, getting better at baking and cooking and sewing just to keep herself busy, although she’s trying to get better at relaxing.
- During one of the stories shared (they couldn’t share all of them obviously but they did share a few), the writer talked about rewatching, including a quote from the psychologist Pamela Rutledge: “It can become really therapeutic, especially if you are feeling anxious. Watching the same piece multiple times reaffirms that there’s order in the world and that it can create a sense of safety and comfort on a primal level.” I’ve always found rewatching to be both enjoyable and helpful to my mental health and Amanda clearly felt the same way, that there’s no shame in it and that people shouldn’t be so weirdly judgemental about it: “Whatever you need to put the blanket on yourself and feel safe, even if it’s just safe for an hour, even if it’s just to calm your breathing for an hour, do it… Like, absolutely.” She got visibly emotional again – “I’m gonna cry but…” – and talked about how anxious she had been about the livestream, whether she could actually do it and whether she could do it justice, and so she rewatched Downton Abbey with her daughter which is their thing, especially when one or both of them are anxious (I find it so comforting that we both do this, albeit with different shows). She said that, whatever it takes, we have to allow ourselves these comforts without shame or judgement, whatever it takes to get through. As I said, she was visibly emotional (to the point of actual tears and tissues) and it reminded me of just how much she cares; she cares so fucking much. She cares more than we could possibly imagine and that’s just so moving.
- She and Rebecca discussed the idea of always appearing fine, of never letting people see when you’re struggling. Amanda said that, when she’s running a set, she’ll put on the mask and make sure everyone feels confident and feels like they can rely on her because that’s what they need but, when it’s safe, it’s so important to let it all go and not be okay if that’s what you need. The examples she gave were amazingly honest and, again, I was touched that she would share these things with us; She’s such an open, generous person and the fact that she trusts us with these parts of her life mean so much to me that it’s almost overwhelming. As she said, this idea of allowing yourself to be yourself and fully feel what you’re feeling isn’t new or groundbreaking but it is important and needs to continue to be part of the conversation. She said, “It will be okay and it will pass,” and it was hard not to feel her conviction even though I often don’t feel that way.
- They also talked about social media and how often it can become the highlight reel of your life (I’ve always found this viewpoint really interesting because it never, ever occurred to me to use social media in that way and so I never have, which makes it fascinating to me that people do), which isn’t a new concept (family photo albums, for example) but has gotten out of control with social media. Amanda said that she noticed herself doing that on Instagram and that maybe she needs to post “the shit” more often. They also discussed how easy it is for people to send hateful messages through social media and Amanda said how hurtful it was – and still is – to read some of the awful messages about herself or the show she was in at the time, although the worst ones were when people attacked her appearance: “It killed me every time I read something crappy.” They talked about how one of the best ways to handle that sort of thing is to take it to a friend, to talk it through and even make fun of it to make it less painful.
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.
It Only Took Eight Years…
Posted on April 22, 2023
Last week, I had a little moment – relating to being autistic – that just utterly made my week, my month… you get the idea. And I wanted to share that on here.
Sometimes it feels like medical professionals just don’t get it and it’s easy to feel pressured into making decisions that we wouldn’t necessarily have made had our needs been understood and had we been given more time to think about it. But then something like this happens and it just… makes me feel hopeful, I guess. That things will get better, that people will become more aware and more understanding.
If you’ve been following me for a while, you may remember that I’ve been going to a specialist dental clinic for several years now, having had some pretty traumatic experiences at the dentist before that, before my Autism diagnosis. Since then, going to the dentist has been a lot less scary; I think it will probably always be stressful but it is a lot easier than it used to be (and for that I am very grateful).
I was at my appointment last week and after a gentle and patient check, my dentist ran through the potential next steps. Then she paused and acknowledged that I probably needed some time to think about it, that, while I seemed calm, she didn’t want to make any assumptions about what I was actually feeling and what I would be comfortable with. It surprised me in the moment but fortunately it was an easy choice so we moved on quickly. But then, as I was walking out, I processed what had just happened and I was kind of floored by it. I don’t think I’ve ever had a medical professional say something like that to me before, not in the eight years since I was diagnosed as autistic: I probably needed some time to think about it, that, while I seemed calm, she didn’t wanted to make any assumptions about what I was actually feeling and what I would be comfortable with. (I’ve talked about masking and needing time and feeling pressured with therapists but I don’t really put them in the same box as every other kind of medical professional: GPs, consultants (some who work with autistic people and therefore really should know better and some who don’t but should still know better), mental health professionals, dentists, etc.) If I had a pound for every time someone just assumed I was fine because I look fine – even knowing that I’m autistic, even knowing about masking – I would be unbelievably rich. So, having that acknowledged and considered and validated… I don’t even know how to describe how great that feels.
While having this all the time would be amazing, I’m really grateful to have it in a medical space, the kind of space that can be so stressful and pressured. Generally I’m not afraid to tell people that I’m struggling but masking or that I need time to think about things but after so many traumatic experiences in medical settings, I find it very hard; the pressure feels more suffocating and I feel so close to panicking. It would be great to have more people like my dentist with her approach in healthcare but, in this moment at least, I’m just deeply grateful that I have one safe space when it comes to managing my health.
I’ve been thinking about this experience a lot since it happened and while I remain incredibly grateful to have this dentist taking care of me, I just can’t help wondering what it would be like if there were more people like her, not only in medical spaces but in society in general. I can’t even imagine what that would be like. I’m pretty loud and proud about being autistic (even if I don’t always feel proud – I just can’t bear the thought of being even a small part of the reasons why someone might feel bad or scared or ashamed of being autistic) but I don’t always feel safe doing that. And that applies to everything from physical safety to work opportunities to potential friendships. I’m painfully aware that I could be jeopardising those things when I make it clear that I’m autistic (not that it will stop me – after all, it’s going to come up sooner or later). I just can’t help imagining what it would be like to be and talk about my whole self and feel safe doing that.
Finding Hope 