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 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.

Anxiety Around Social Media

Social media is a big part of all of our lives. For me personally, it’s a massive part of my job, of being an independent artist, of getting my music out into the world. It’s a big part of sharing these blog posts with people. And it’s a big part of keeping up with the lives of my family and friends. There’s some really good stuff there. But I also find it really hard; it causes me a lot of anxiety and when I’m in a fragile state of mind, it can contribute to my depression. And since this is the place where I talk about those things, I thought I’d write something about social media and some of the reasons I struggle with it. Maybe you guys will relate.


  • Seeing something upsetting – My anxiety, my depression, all of my emotions (which are powerful on a normal day)… they’re all very easily triggered and social media seems to be very good at that. One post, even if it’s not directed at me, can really upset me: scary political or society or world stuff that I can’t do anything about, harsh statements, unnecessary criticism of public figures I feel invested in (especially if it’s inaccurate, which it often is), and so on and so on. It’s so hard to climb out of the misery that one stupid post can cause that sometimes it feels safer just to avoid social media altogether.
  • Seeing something good happen for someone who hurt you – Chances are that, even if you’re not connected with the person who hurt you, people you are connected with are and so you’ll probably still find out about what’s happening in their lives. And honestly, sometimes I’ve found it easier to remain following them on social media so at least these moments don’t come out of nowhere and pull the carpet out from under you. Even if you think you’re over it, even if you are over it, seeing something good happen to someone who treated you badly when you’re in a fragile place can be really hard to manage emotionally, turning a good day or week into a bad one.
  • Seeing your ‘competition’ doing better than you – Even if you aren’t a competitive person, if you work in an industry that is, by it’s very nature, competitive, seeing someone do better than you (have success at something similar to a project of yours, get funding that you were hoping to get, etc) can trigger insecurity, even if you were in a really good, solid place before you saw it. Personally, I can only speak to the music industry. I want my friends and my peers to do well because I know how talented they are and how hard they work but, of course, I also want to do well. So while I’ll always feel pleased that they’re doing well, I can find it difficult as well, especially if I’m stuck in a rut, in a bad mental place, or having any other number of difficulties. It’s a complicated one. In fact, I think they all are.
  • The posts of others making you feel limited – There are various ways you could interpret this point but for me, as a disabled person with mental health issues, it can be really, really hard to see other people out in the world, doing the things that you want to do but can’t because you’re limited by whatever symptoms you live with. I struggle with this a lot and I think part of it comes from being diagnosed so late: I spent twenty years believing that I should be reaching (and exceeding, if I’m honest, because I’ve always been a perfectionist) the same standards as everyone around me. It started to become apparent that I couldn’t and since then we’ve been assembling the puzzle as to why but that hasn’t completely changed things in my head. I know and I understand why I can’t necessarily do the same things as my peers but I’m still really hard on myself when I can’t. I know it’s a process but it’s one that seems to be taking an inordinate amount of time, regardless of how I try to realign everything.

I’m pretty good at curating a mentally and emotionally safe social media bubble. It still allows healthy debate and differing views, of course, but I’m just really careful about where those views are coming from, i.e. not people who continuously rant and rage but people who share carefully considered thoughts and discuss them with equally considerate people. It’s obviously not that straightforward – it never is with social media – but it is possible to block out a lot of the negativity, the people who are being negative just to be negative. But even then, there are always posts that pop up out of nowhere and knock your feet out from under you.

It was a strange experience, researching for this blog post. While I’m usually writing about my own experiences on this blog (in this case with social media), I often read other blogs and articles to get a broader perspective, get more context, and making sure I’m not missing anything that would be important to include. During my reading for this post, something that came up a lot was the issue of presenting a persona online that isn’t quite the same as your own and to me, that was a surprise. I’ve honestly never felt the pressure to present as anything other than myself – although, I admit, snippets of myself rather than the whole experience (no one needs to know about this boring day or that book I never finished reading). I’ve always seen social media as a reflection of myself, the good and the bad. Maybe that’s an Autism thing – linked in with the commonly occurring need for and sense of honesty. So I can’t really speak to that; I’ll leave that to someone who has more experience with it (I wanted to add a link but I haven’t found one that I think is actually helpful beyond explaining the problem – I’ll add one as soon as I find one that offers something more helpful).

I don’t know what the answers are. But just because we don’t know what the solutions are, it doesn’t mean we stop talking about the problems. That is, afterall, how we eventually come up with the solutions. I need to use social media in order to work and I’m aware that I do get some real good out of it but the downsides can be really hard to handle. So, yeah, I don’t really know what to do. But writing out my thoughts has always helped me and maybe some of you out there will relate to this. Maybe you’ll have some thoughts about it; maybe you’ll just feel a little less alone. I hope so.

Experimenting With A SAD Lamp

Before I knew about my vitamin D deficiency, I was obviously aware of how tired I was, even moreso than usual. Since I’d also been struggling with my mental health, I thought I’d try out a SAD Lamp to see if it could help with my depression and my low energy levels. Since we were going into winter, a notoriously difficult time of year for people who struggle with their mood, I thought that if there was ever a time to try it out, it would be now.

I must make it clear that you should never use a SAD Lamp without approval from your doctor, as the effects can have a negative interaction with certain medications or a detrimental effect on your eyes depending on your prescription and history. So please, please don’t simply try it out without the advice of your doctor.


I kept notes throughout the eight weeks I experimented with the lamp, in order to keep track of what I tried and how I felt throughout the period. I followed all the instructions, tried different intensities and different lengths of time; I researched what others had found helpful and how long it had taken for them to feel the effects.

Nothing I tried made any difference. I’m as sure as I can be that I gave each different experiment enough time for me to feel some kind of effect but it didn’t seem to help at all. I was just as tired and just as low. During this time, I started taking the vitamin D supplements and when those started to take effect, I gave up my experiments since I didn’t know what else to try. The supplements seem to be helping so I’m content with that, even if it was frustrating that the SAD Lamp hadn’t helped.


I don’t want to discourage people from trying SAD Lamps. I have friends who’ve found them helpful and I’ve read many positive accounts so there’s definitely proof that they can improve things for people. But apparently it’s not for me, at this particular moment at least.