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:
Category: adhd, anxiety, autism, death, depression, diagnosis, emotions, medication, mental health, school, self harm, suicide, therapy, treatment Tagged: adhd, antidepressants, asd, attention deficit hyperactivity disorder, autism, autism spectrum condition, autism spectrum disorder, autistic, bupropion, content warning, cw, depression, disfigurement, ect, electroconvulsive therapy, it's kind of a funny story, ketamine, ketamine trial, masking, medical trauma, medication, medication change, ned vizzini, passive suicidal ideation, phenelzine, psychotherapy, quote, secondary school, self esteem, self harm, self hatred, self injury, sixth form, sixth form college, suicidal, suicidal ideation, suicidal thoughts, suicidal urges, suicide, therapy, treatment, treatment resistant depression, trigger, trigger warning, tw, world suicide prevention day, world suicide prevention day 2023, wspd, wspd 2023, xaggitin, xaggitin xl
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 June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university

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