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.

Seeking Treatment For Chronic Fatigue – Part 1

As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.

I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.

It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.

When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).

I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.

But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.