Mental Health Awareness Week 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.

Everything Changed For Me This Year (Autism Awareness Day)

Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.

For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.

But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).

(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)

  • I was diagnosed with Depression and Anxiety by one psychiatrist.
  • I was diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD) by my long term psychiatrist.
  • I was diagnosed with Autism Spectrum Disorder and had the BPD diagnosis confirmed at the local Neurobehavioral Unit.
  • My therapist explained that my mental health issues, particularly my BPD, may have stemmed from the continued invalidation of my ASD.
  • A few years passed.
  • After a discussion with my psychiatrist, my mental health related diagnoses were updated, changing to Treatment Resistant Depression (TRD), Generalised Anxiety Disorder (GAD), and BPD.
  • I was (re-)diagnosed with OCD after further sessions with my psychiatrist.
  • My GP diagnosed me with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) when we could find no obvious cause for Chronic Fatigue I’ve been dealing with since I was twelve.
  • A couple of years passed.
  • I started to develop Chronic Pain that got dramatically worse over a period of several months.
  • I was referred to a specialist who diagnosed me with Hypermobility (apparently individuals with Hypermobility are seven times more likely to be autistic), which led to a diagnosis of Hypermobile Ehlers Danlos Syndrome (hEDS), explaining my Chronic Fatigue and Chronic Pain as well as a number of other ‘smaller’ symptoms that, due to the bigger problems, had been ignored. This, as far as I can tell, makes the ME/CFS diagnosis void.
  • I was also diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), many of the symptoms overlapping with my ASD, during the same period.

And suddenly all of the pieces started to click together:

THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.

MY ASD AND HYPERMOBILITY ARE LINKED.

THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.

Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.

One Year of Self Isolating

As of today, I have been self isolating for a whole year. 365 days. In that time, I’ve probably left the house no more than twenty times: for one morning of work (that had to be done out while the rest I’ve been able to do from home), for medical appointments, for swimming/hydrotherapy. And a haircut (when my Trichotillomania was particularly bad) during a period when it was considered safe to have one. But other than that, as a vulnerable person, I’ve stayed home. I worked out the numbers and that means I’ve spent 95% of the last year in my house. I look at that number and it kind of blows my mind. I’ve always been a homebody but this is so not the same thing.

So, to acknowledge the occasion, I thought I’d make a post about it. I thought about doing a list of good things and bad things, but given that the year has been dominated by the pandemic, that just felt wrong. Like, in general, it feels like the bad things carry so much more weight; a list like that just didn’t feel like an appropriate way to look at the last year. So, instead I thought I’d make a list of some of the things I’ve learned this year. There have been so many new experiences, new approaches to everyday tasks, new thoughts, new emotions, and so on. So I thought that might be a better way of looking at things. I doubt I’ll remember everything but I’ll give it a go.


  • ADJUSTMENT TAKES TIME – Going from normal life, the same lives we’d been living for considerable periods of time that rarely changed dramatically, to suddenly spending all of our time inside, missing our friends and family, and dealing with all of the fears and unknowns around COVID-19 was a big deal. A really big deal. And as someone who really struggles with change and uncertainty, this was a nightmare for me. I was barely functional for the first few weeks, if not months, because I was so overwhelmed. Eventually I managed to do the bare minimum but I continued to really struggle with anxiety. And things that had once been normal suddenly felt hard: I couldn’t concentrate enough to read anything; my songwriting felt blocked by my fear around the pandemic; cowriting sessions had to take place over Zoom, which felt awkward and made being creative more difficult; doing therapy via Zoom felt weird and the conversations felt limited and stuck because COVID was obviously the biggest thing going on but I really didn’t want to talk about it because it felt so upsetting. All of these things have gotten better over time (the reading is still a struggle though). At the time, the stagnation was unbearable but slowly I adjusted to each new version of normal and each time, I adjusted more quickly and with less difficulty. It’s all had a cumulative impact on my mental health and it’s gonna take a lot of work to get back to where I was pre-pandemic but I’m coping better than I was earlier on in the pandemic.
  • I HATE HAND SANITISER – I really hate it. I will 100% use it without complaint because I know how important it is in the effort to keep us all safe but oh my god, it feels (and smells) disgusting. As someone so sensitive to sensory stuff, I have really struggled with it but if it’s helpful, if it’s the right thing to do, I will willingly put up with it. I get the impression that it’s going to be a part of our lives for the foreseeable future so I’m going to make it a priority to find one that I don’t hate, just to make the experience less gross.
  • I NEED STRUCTURE BUT I CAN’T DEAL WITH EXACTLY THE SAME THING EVERY DAY – Knowing what is going to happen in my day is a really important part of managing my ASD and my mental health; having structure and certainty helps me to avoid anxiety and be more productive. So planning and a certain amount of routine are massively helpful but having such a strict routine that I do exactly the same thing at the same time everyday isn’t helpful. It just makes me feel trapped and anxious and suffocated.
  • PRE-PANDEMIC, I WAS SO LUCKY TO SEE MY FRIENDS AND FAMILY AS MUCH AS I DID (AND I HOPE THAT THIS WILL CONTINUE ONCE AGAIN WHEN IT’S SAFE) – There’s not much to expand on here. I feel so lucky to be so close to my family, to have always seen them so often before the pandemic. Having to go without seeing so many of them (in person) for so long has been really, really hard. I also feel really lucky because I know that, as soon as it’s safe to do so, this will continue. I can’t wait.
  • I’VE LEARNED WHAT I REALLY NEED IN A FRIENDSHIP – This isn’t related to the pandemic directly (so many of us have been struggling socially so it would be unfair to judge someone on whether they’re a good or bad friend based on this period of time) but it’s something I’d been thinking about before the pandemic and I continued to reflect on it during the lockdowns. I thought about the friendships that have lasted and the friendships that haven’t and had a bit of a revelation about the few fundamental things I need to be getting out of a friendship in order for them to be positive and fulfilling and, in addition, what makes a friendship draining and detrimental. That’s where it turns from a friendship into something unhealthy. But I think I’ll expand on all of this in another post.
  • I’M REALLY LUCKY TO HAVE THE FRIENDS I DO – My friends have been my lifeline to reality over the last year, a year of feeling like I’m trapped in a box (a feeling I’m sure, many, many people can relate to). I haven’t been as good at staying in contact with some as with others but it’s because of them that I’m pretty sure that I haven’t completely fallen apart. I feel really lucky to have a handful of friends from each ‘era’ of my life so far (school, college, university, and now post grad) that I’ve stayed close to but I feel like we’ve become even closer this year, even though we haven’t been spending time actually together. I’m really grateful to have these incredible people in my life and I just hope they know how much they mean to me.
  • SWIMMING MAKES ME FEEL REALLY GOOD, IN MYSELF AND ABOUT MYSELF – Swimming is the only form of exercise that I can do without pain but due to the constantly varying pandemic restrictions around gyms and pools, I haven’t had many chances to swim. But the times I have managed to swim have felt fantastic. It makes me feel almost giddy with joy and it also makes me feel strong and in control of my body, all things that I rarely ever feel. I can’t wait to swim as much as possible (and is sensible) as soon as it’s safe.
  • IT CAN BE SO EMPOWERING TO BE AN INDEPENDENT ARTIST/MUSICIAN – That’s not to say that it’s not hard, or even impossible sometimes, that it’s not utterly terrifying. Because it is. A lot of the time. For me, at least. I can’t speak for anyone else. It is very scary to be the one ultimately in charge of your artistic career because every decision and every consequence comes back to you. And oh my god, it’s incredibly expensive. But putting all of that (and more) aside for a minute, it has felt very empowering over the last year to be that person in charge: no one knows what’s happening, no one knows what’s going to be happening in three months time, so you just have to go with your gut and hope it’s the right choice. If it isn’t, it isn’t and that’s disappointing but being a new, independent artist in a pandemic is hard and possibly the worst time to be starting out so I think we all, at the very least, deserve some credit for even trying. And then there are the choices that do work out and they really make you stop and think because that came down to you or you and the small team you work with and it actually worked. It was actually successful. And that’s pretty mind blowing, especially so in these completely unknown times.
  • ONLINE LEARNING IS HARD, BUT THERE HAVE BEEN SOME BENEFITS – I can’t talk about online learning without recognising that I’m in a very fortunate position compared to many other students: I was and still am living at home, my university and my course are relatively small, my course can be completed remotely (although, of course, I’d much rather be doing it in person) even if it is much more difficult, the available technology has made it possible to continue creating and creating collaboratively, I have a good mental health (and now physical health) support system and so on. I’m very lucky. It’s been painful and difficult at times but less so than it could’ve been, not that I would’ve said so during the painful and difficult times, of course. But I feel closer to my coursemates than I’d have thought possible, given the fact that we’re only ever together via a screen. But we’re all going through this big, unknown, scary, frustrating, upsetting experience together and I think that’s created a unique bond. I can’t say whether or not we’ll all still be in touch in, say, ten years time – I hope so – but if we aren’t, I know I’m going to look back and think, “Those were some of the people that got me through the terrifying experience of the COVID-19 pandemic and for that, they will always be special to me.”
  • ALL OF MY DIAGNOSES ARE CONNECTED – Again, this isn’t pandemic related but I don’t know if it would’ve happened (or, at least, happened now) if not for the pandemic. After years of researching, endless doctors appointments, SO MANY referrals, and talking to various different consultants, we finally struck gold and found a superhero in the form of a hypermobility specialist. She was able to make things happen, move various processes along, and just get people to listen to me. Since meeting her, I’ve had various tests and appointments and a couple of diagnoses that seem to have finally pulled all of my apparently unrelated problems together, which is both overwhelming and… good. I kind of haven’t processed beyond that. Again, I want to go into this in more detail in another post, when I’ve processed it more deeply and where I can go into much more detail. But it’s a big deal. A really big deal.
  • AS PART OF A SOCIETY, WE ARE PART OF SOMETHING SO MUCH BIGGER – I obviously knew this already but that knowledge has felt different since the pandemic began, when it became clear that we were going to have to act as a collective to reduce the effect of the virus and return to something that at least vaguely resembled normal. And in some ways, that’s been a very powerful and emotional experience with people stepping up and helping each other simply because they could and because it was the right thing to do it. Although, having said that, it’s also been hugely frustrating to watch people not do their part when so many people are making such sacrifices. But on the whole, it’s been an honour to be a part of a group doing all they can to end the pandemic. What I personally can do, of course, is not on the same level as the frontline and essential workers – my god, not even close – but if the most I can do is obsessively follow the safety instructions and stay at home unless absolutely necessary, then that’s what I’ll do and I will do it without hesitation. I have such incredible respect for these people who have helped so many, who have made such sacrifices, and who have gone through so much during the pandemic that I will do (or not do) whatever is asked of me to make their lives and their jobs even the slightest bit more manageable. I will never forget what they’ve done for us during this time, not for as long as I live.

As I said, I’m sure there are more things that I’ve learned during this time but I think that these are all of the big ones, the big, personal ones. I’m included in the group currently being vaccinated (although I’ve yet to hear anything) so maybe I will be heading out a little more often once that happens, if only to get some more exercise. But to be honest, given how this last year has affected my mental health, I don’t think I’m going to be exactly quick to adjust to the idea that things are somewhat safer (the government certainly seems to think so, what with their plan to come out of lockdown). As desperate as I am to see my friends and family again and get back to swimming again, I don’t think I’m going to feel safe again for a long time: as I said, I don’t cope well with change.