Finding HopeMental Health Awareness Week 2022
Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
A Love and Hate Relationship with Autism Spectrum Disorder
Posted on March 30, 2022
Being autistic is complicated (to state the obvious). It’s never just one thing, in my experience at least. It’s not even one thing on one day, one thing in one moment. It’s good things and bad things all wrapped up together and while I can advocate and applaud ‘Autistic Pride,’ I’m not sure I’m there yet. But I can appreciate the good and the bad and so, considering it’s World Autism Acceptance Week, I thought I’d post something about just that: the good and the bad and learning to live with them…
Autism, as we know, is a neurobehavioural condition so the traits associated with it are right down in our wiring, just like the rest of our personality traits: being autistic is at the very core of us and everything else is built upon that foundation. There are some things about being autistic that mean a lot to me, things about myself that I love and value, including…
- A NEED FOR AUTHENTICITY – Obviously I can’t control whether or not other people act authentically but I need to be authentic. If I act differently to how I feel, it has a negative impact on my mental health and on my happiness. So, to be happy and mentally healthy, I have to act on how I feel and be who I really am and it’s in following that rule (for lack of a better word) that I’ve had the best experiences and created the things I’m most proud of. As I said, I can’t make that choice for other people but I do think that, on the whole, I get on better and make stronger connections with people who are authentic.
- PASSIONATE ABOUT THE THINGS THAT ARE IMPORTANT TO ME – If I love something, I love it with everything I have. I will fully immerse myself in said thing; I actually find it hard not to. That can sometimes make doing normal, day-to-day things hard because all I want to be doing is engaging with this thing I love but I’d rather love wholeheartedly than feel ambivalent about stuff.
- LOYALTY – When I care about somebody, I’m all in. I’ll do anything for my friends, sometimes to a pretty extreme degree: like, once I improvised travelling home from Nashville because my flight was cancelled and I’d promised a friend I’d be home for something or like, once I woke myself up every hour to check whether a friend who was in hospital had tried to get in touch because she was scared about being in hospital alone at night. Putting that much into a friendship or relationship does mean I’m more likely to get my heart broken (and it already has been) but like all of the things that matter to me, I’m never going to want to care less about people. I mean, on the bad days, sometimes I do – it would make life easier – but, as a person, I like that I care that much. It’s not always easy (or healthy) but overall, I always think it’s better to care more than less.
- STUBBORNNESS – I am stubborn as hell and sometimes it’s a pain; sometimes I can’t let things go even when I want to. But being stubborn has also gotten me through a lot of hard stuff and helped me make a lot of good stuff happen.
- IT GAVE ME PURPOSE – All I want to do is make the world a little bit better. That’s all I want. I hate seeing people unhappy or things not working so I’m always looking for ways to help and make things better but the world is a big place with lots of problems and it’s easy to feel overwhelmed and helpless. But finding out that I’m autistic, that gave me a place to start and the more I’ve learned, the more I want to help make being autistic an easier, less harmful, and ultimately better experience. And that’s what I’m trying to do, whether that’s with this blog, my music, or by trying to improve the accessibility and understanding wherever I go.
But there are also things about being autistic that I hate, that I struggle with, that cause me problems, and upset me deeply. I know it’s not healthy to focus on the difficult parts (unless you’re, for example, working on something specifically in therapy or counselling) but I do believe that acknowledging the negatives is important and validating. Endless positivity is not helpful and can end up being harmful so here are some of the things that I hate about being autistic…
- LACK OF INDEPENDENCE – With the sensory issues, fatigue, mental health problems, etc, my independence is severely hindered. And as hard as I work to improve my stamina and my mental health and so on, I don’t know how I’m ever going to be completely independent. If it’s even possible. The idea of living by myself is one that I can’t even really imagine ever being realised. And with that being such a standard rite of passage that holds such weight, it’s hard not to feel inadequate or broken.
- FEELING FROZEN – I still don’t really know how to describe this feeling and I can’t say for sure what caused it or when it kicked in but I feel very stuck, particularly in the developmental sense. I feel stuck somewhere between teenager and adult; I feel all the pressure of being an adult but I also feel incapable of doing a lot of the things that make it impossible to meet all of those expectations. All of the things that impede my independence come into play here too, like my lack of energy and my issues with pain. Just existing is an exhausting experience; living as everyone else does feels like an impossible dream.
- THE SENSORY DIFFICULTIES (WITH FOOD IN PARTICULAR) – Sometimes just being is really hard. Every light is too bright, every sound is too loud, every smell is overpowering, every fabric is itchy… and so on. It’s not like that everyday, at least not for me. But it is like that a lot. And most of the time, it makes doing normal things like eating, drinking, going about my day, etc, just that bit harder. I would love to not be phased by restaurants for example: to not worry about the fact that there’s probably nothing I can eat, or potentially even drink, apart from water (and even then it usually has lemon or lime or cucumber in it). Even small things feel so complicated. I’d love to be able to just meet a friend for coffee and that be that but between whatever we eat or drink, how loud it is, and all of the other sensory factors (and that’s not even thinking about all the sensory stuff involved in the travelling), it’s just exhausting. And I wish it wasn’t.
- THE RESULTING MENTAL HEALTH PROBLEMS – While we will never know for sure, I (and the mental health professionals that I trust and have worked with for years now) strongly suspect that many of the mental health issues I deal with, are at least partly down to being autistic, and specifically, being diagnosed as autistic so relatively late. Anxiety, depression, OCD, BPD, and ADHD are all comorbid to Autism. Maybe some of them would have developed on their own but I’m sure the Autism did not help and the amount of distress that these problems cause isn’t something I can easily put words to. Every day is a struggle because of them. Let’s leave it at that for now.
- THE LACK OF UNDERSTANDING, FROM EVERYONE (INCLUDING MEDICAL PROFESSIONALS) – Everywhere I go, I have to teach people about Autism, even the most basic stuff. From friends, to teachers, to doctors, even to people whose entire job revolves around accessibility. No one seems to know anything, or at least anything beyond the basic stereotypes. There’s almost no decent representation out in the world, in the media (which makes it very easy to feel alone and/or broken) – the vast majority of it is harmful. So many people still don’t even know that Autism manifests differently in girls. Autism is a complicated thing so I don’t mind helping people understand it, understand some of the nuance, but I hate how bad the general understanding is, especially when it’s people who should know better (when it’s part of their job, for example). This is why so many people are diagnosed so late and struggle so much: even the people who should have a working knowledge of Autism don’t and it’s really not good enough.
So, this was a bit more exposing than I’d expected when I started writing. But there it is. Almost a decade later and I’m still figuring out what it means, to me, to be autistic. It’s complicated and it’s hard and some days I’m really proud that this is who I am. I guess the goal is to have more of those days.
My First Experience With ADHD Medication
Posted on December 18, 2021
TW: Mentions of self harm and suicidal thoughts.
And ten months after being diagnosed, I finally started taking medication for my ADHD. If you’ve been following this blog, you may remember that I was diagnosed back in January and, due to the disruption it would’ve caused at a crucial point in my Masters, I had to wait to come off my antidepressant (Phenelzine is contraindicated with stimulant medication for ADHD) and then start the ADHD meds. But, as of mid November, I could start taking Xaggitin XL (definitely my most strangely named medication so far); I’d researched it and read multiple accounts that it hadn’t affected creativity and my ADHD specialist didn’t have a problem with trying it when I suggested it. And as I always do, I kept notes; it helps me to remember what each medication was like and hopefully it can be helpful to anyone who might be taking or about to take the same medication. But, as always, it’s important to state that this is a medication I was prescribed by my doctor, according to a plan that we decided on together. This is just my experience; please speak to your doctor if you have any questions about your medication.
WEEK 1 (18mg)
I started to feel the side effects straight away. From the second day, I was experiencing overwhelming, almost constant nausea. It got worse if I rushed around or even stood up for too long and I’d end up curled up on the floor, focussing on just breathing until it passed (by the end of the week, I had figured out and was getting better at avoiding the things that made it worse). That combined with a massive loss of appetite meant I really wasn’t eating much, although most days I managed to force at least one meal down. I also started having trouble with my sleep. It would take me hours to get to sleep – usually between two and four am – which meant that my sleep schedule started to shift. It was so hard to wake up in the morning and that just meant I ended up going to sleep later and as hard as I tried, I couldn’t keep my routine from moving several hours around the clock.
My mental health also took a hit, which wasn’t entirely surprising since I no longer had the Phenelzine in my system. I started to feel overwhelmed and fragile. My anxiety increased and I even had a panic attack, not something I usually struggle with. My depression started to creep back in too; it wasn’t too bad but it was there.
The cough was still hanging around and I had multiple migraines (some that I managed to cut short with medication and some that took me out of commission completely) but both of those could’ve been left over from coming off the Phenelzine, having been big problems throughout that process. I’m not sure.
WEEK 2
The nausea, the lack of appetite, and the trouble sleeping persisted. As did the cough (I’ve taken several COVID tests since it started and they’ve all come back negative). I also felt even more scattered than usual: I couldn’t focus on whatever I tried to do and I started losing my train of thought mid-thought, which was very stressful. I felt completely unable to do anything.
By the end of the week, it felt like everything was starting to fall apart. I was really struggling to write. What I’d thought was just a few bad days (unpleasant but not unheard of) turned into an awful week; the internal flow that makes writing so easy and so calming was suddenly absent and even the forms of writing that have always felt easy (regardless of whatever’s going on with my mental health) felt awkward and forced. My mental health had started to get really bad – my anxiety and depression had gotten a lot worse – and that just made it worse. And on top of that, I had started to have suicidal thoughts again, which I haven’t had – consistently, at least – for years.
WEEK 3 (36mg)
The nausea and lack of appetite were still really bad so I wasn’t eating much. I tried but it was really hard. Sleeping was also difficult. I was wide awake all of the time – like I was highly caffeinated – even late into the night, which didn’t help in my attempts to get my sleep schedule back to normal. Most of my nights were disturbed one way or another and I had one night where I never went to sleep at all; I didn’t even start to feel sleepy until I’d been awake for over thirty six hours. It feels very strange considering that even three months ago I could barely stay awake, even with two Red Bulls in my system; talk about from one extreme to another…
I was still struggling with concentration and my mental state was only declining. I was consistently depressed – feeling hopeless and alone – and there were days where I struggled to get up, not just because of the nausea but because everything felt so overwhelming and difficult. The suicidal thoughts continued and I did self harm once. My anxiety also got worse and I had another panic attack.
WEEK 4
The nausea got even worse, lasting all day and making it even more difficult to eat (or do anything at all, to be honest). And having no appetite didn’t help with that. My sleeping was still awful too, despite how physically exhausted I was starting to feel after so many nights of poor sleep. The cough and difficulty concentrating continued and I had a couple of days that were monopolised by migraines (or maybe one migraine that never quite went away).
My mental health deteriorated further. I was incredibly anxious and my depression just got worse. I’m pretty sure it’s the worst my depression has ever been, based on what’s been going on in my head. The suicidal thoughts continued but they are different to what I’ve experienced in the past. It’s been a lot. I can’t know for sure whether this is down to the lack of antidepressant in my system, a reaction to the ADHD meds, or both.
That last week was a big week, which was unfortunate considering how awful I was feeling; it made it hard to enjoy or get the most out of those events – going back to therapy after several months away, my Mum’s birthday, and a visit from a friend for both work and fun – and then I felt physically worse afterwards, physical exhaustion and pain in addition to the ongoing side effects of the medication.
So it’s been a rough month. The nausea and trouble sleeping has been awful but the anxiety, depression, and suicidal thoughts have been worse by far. And losing the ability to write has been unbearable. After speaking with both my psychiatrist and ADHD specialist, it’s been decided that I’m going to stop taking the Xaggitin and try Bupropion, which should – hopefully – help my depression as well as my ADHD. So that’s another month gone and the waiting game begins again.
Finding Hope 