2021 in Review

I’m not really sure how to sum up this year. It has been one of extremes, to say the least: anxiety, joy, stress, excitement, depression… And, at this point, I feel a bit like I’ve run out of capacity. For anything. So this was a hard post to write and it wasn’t helped by the dichotomy between most of the year and the last few months; I’ve found it very hard to look at each part without the other colouring it in some way.


The biggest part of my year was most definitely the final two modules of my Masters, which turned out to be my two favourite modules of the course, The Writer’s Voice and Major Repertoire Project. Having written about these already, I don’t want to repeat myself but I do want to look at them in the context of the year. From January to September, I wrote furiously and with such joy. There was anxiety and depression and stress – they were all in there – but it felt like all of that writing balanced the scales. I wrote so many songs that I love, that I’m so proud of, and that I can’t wait to release. While I did release new music this year – The Honest EP (Sunburst Sessions) – they weren’t new songs and I’m so excited to share new songs. I have lots of plans that I’m really excited about and despite the chaos of the last few months, I have been working on my next project. I’m very excited to share it in the new year.

I’m very proud of myself for completing the Masters, especially given that I did most of it during the pandemic, and I’m so proud of my final project; it is the best thing I’ve ever done and I can’t wait to get it out into the world. I poured everything I had into that project so getting such a high grade and then the Outstanding Student Award at Graduation felt really good. I feel weird talking about it but I am really proud of that achievement and the recognition of how hard I worked means a lot to me. Because of an administrative screw up, I’m not sure when my graduation will be official, when I’ll get my certificate – something that caused a lot of distress – but practically, it’s done.

My health, both physical and mental, hasn’t been in great shape this year. The chronic pain was really bad, the fatigue not much better, and the ongoing migraines are pretty miserable. My mental health was fairly stable and actually not too bad for the most part, until the last few months of the year. Then it got really bad. In order to try medication for my ADHD, I had to come off Phenelzine – the only medication that’s ever helped me – and then start Xaggitin. That went extremely badly. My depression all but overwhelmed me; it was the worst my mental health has ever been. I’ve stopped taking the Xaggitin and I’m taking Bupropion now and it’s different but I’m not sure if it’s any better though.

I’ve felt very alone this year, in regards to tackling and managing all of this. I came out of every appointment feeling angry, distressed, dismissed, or invalidated (and often multiple of these in various combinations). I haven’t felt safe with any of them; I didn’t feel like my existence even registered with them. So I’m finding all of that very hard and each new appointment is preceded by extreme anxiety, a kind of anxiety I’ve rarely experienced. It’s a bit like a fight or flight response. I’ve never had a great relationship with the medical profession but I’ve felt particularly let down this year. I have finally managed to get back to therapy (although this was before the newest variant threw a wrench in all of our plans) but it’s been a long time and a lot of stuff has happened; I feel like I’m having to learn how to do it all over again.

It’s also been a hard year, family wise. I haven’t been able to see one of my parents – in real life – since before the pandemic (for medical reasons) and that has been so hard. We talk on FaceTime and stuff and that’s good but I still miss her so much. And then, of course, my Granny died in September, just as I was finishing my Masters. At that point, I think, my brain just couldn’t take anymore; I don’t think I’ve processed any of it, to be honest. To a certain extent, I feel frozen, like I stopped while everything around me kept going. It’s not the first time I’ve felt like this but that doesn’t make it any easier. I’m sure all of those feelings will make their presence felt in the new year. But as hard as all of that is, I’m so grateful for the friends and family around me; I’m not sure where I’d be without them.

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“What a surreal year. I don’t even know how to sum it up really. Everything I felt, I felt in extremes: stress, anxiety, depression, joy, excitement. I wrote songs that I’m so proud of, I hugged friends I hadn’t seen in months, I completed a Masters degree that I loved. I struggled with even more health issues, I was almost overwhelmed by the worst depression I’ve ever experienced, and I’m learning to live in a world that doesn’t have my Granny in it. The high points were so high and the low points were so low and I’m honestly exhausted right now. This year has been more than I know how to handle and I’m still kind of drowning but I’m also still here.” (x)


This end of year post isn’t quite the same as what I’ve done in previous years but it’s been a weird year and I wouldn’t be surprised if I’m experiencing some form of burnout. I have a few plans but honestly, I have no idea what the next period of my life looks like and that’s scary. I hate how my life goes on hold whenever I change medications and I feel more than a bit lost right now. All I can do is wait and see and after all these years, there’s very little I hate more.

The Pros and Cons of Winter

I love every season but by the end of it, I’m always ready for the next one. But, as a neurodivergent person with multiple physical and mental health conditions, different seasons present both different excitements and different challenges. With winter around the corner, I thought I’d share some of the good things and some of the difficult things, along with how I’m learning to cope with the difficult things. This list is, of course, specific to me and my location so it’s not going to match everyone’s experience but hopefully they’ll be something useful to you in here, even if your experience of the season isn’t the same as mine.


PROS:

  • The sensory experience – I think winter is my favourite season as a sensory experience. I love the crispness of the air; I love looking at all of the beautiful lights and pretty Christmas decorations; I love the smells associated with winter and Christmas (in my house, at least), like satsumas, the meals we generally only have in winter, the super sweet smells of sugary puddings and sweets, Christmas trees, and so on; the sight, sound, smell, and warmth of a fire. There are, of course, downsides, like busy shops and blaring Christmas carols but, over the years, I’ve gotten pretty good at avoiding those things.
  • Fires in the evening – My Mum and I both love having a fire to end the day, like a little treat for ourselves. As I said above, I love the sensory experience and we both find it a really good destresser. One of our favourite things about this house is the gorgeous fireplace and every year, we both get really excited about having fires again.
  • Potential for snow – I love snow. It makes me so happy: watching it fall, standing in it as it falls, how beautiful it looks first thing before anyone has disturbed it, the way it crunches when you walk through it, watching the cats try to make sense of it, and so on. And because we get it so rarely, it’s always special. No, it’s not guaranteed but I still enjoy being excited about the possibility.
  • Christmas – I struggled with Christmas in my late teens and early twenties, which I think was largely to do with how much I was struggling with my mental health and ASD. But as I’ve gained a greater understanding of the long-term issues I deal with and talked about them with my family, Christmas has become much more relaxed and enjoyable. They’ve been fantastic at working with me so that I can do the parts that I really enjoy and not do the parts that I struggle with. It’s become such a better holiday since then. I see friends and family (COVID depending, obviously), spend warm and relaxed evenings with my favourite people, get a Christmas tree and decorate it with the decorations my family have been collecting for years, not feel guilty (or at least feel less guilty) about doing things I don’t usually feel like I have time for (like reading books or watching movies all day), exchange presents, and so on. We’ve found a way to make it a really special, enjoyable time.
  • The cats spend more time inside – With the colder weather, my cats (whose presence I find very soothing) spend most of the day inside when, in the summer, they spend almost all of their time outside. So having them around more is lovely. They’re usually in the living room with me, curled up on the cat tree or sprawled across the furniture, or, even better, snuggled up with me on the sofa. They’re gorgeous and it’s one of my favourite things about winter.

CONS:

  • The cold – I hate being cold. You can usually find me in a big jumper or wrapped in a blanket. I’m often cold in the summer so it’s even harder to stay warm in the winter. I’m super grateful for the heating, the fire, my electric blanket, and so on.
  • Managing temperature – I really struggle with temperature regulation. I get hot or cold really quickly but then it can take hours to return to normal (and then it can suddenly jump to the other extreme). And going from really cold outside to really warm inside can just make that even more tricky. Layering helps but only to a certain extent. I have been doing some research and there are brands that make clothes to help with this so I really want to investigate these as I can afford it. (x)
  • Different fabrics – Clothes for cold weather can cause sensory difficulties. They can be bulky, heavy, itchy, and so on, as well as making me feel claustrophobic and trapped in my own clothes, which can cause a lot of anxiety. As I said above, I tend to do a lot of layering with the clothes I’m comfortable in but that isn’t a fix all. I’m still looking for a coat that doesn’t stress me out and I really hate wearing gloves. But I’m still trying to find the best option.
  • Ice – I might love snow but the amount of ice around in winter can be pretty perilous. And between my less than perfect balance and my chronic pain making me somewhat unstable, I do worry that every step could disappear underneath me and land me on cold, hard pavements with painful consequences. Given how bad my pain has been recently, a fall could be very painful and that pain could linger for quite a while.
  • More difficult to meet friends – Especially with COVID in the mix, I find it much harder to meet up and hang out with my friends in the colder months. It’s so much easier (and cheaper) when we can hang out in a park or on the beach or something like that, plus it feels safer considering the times we’re currently living in. But finding somewhere to hang out inside poses certain challenges, like COVID anxiety, meeting everyone’s dietary needs, the costs of hanging out in a cafe for example for an extended period, and so on. It’s just that bit more complicated and harder to organise and I find that plans often get pushed back again and again. So I often end up seeing my friends less in winter which makes me sad.
  • Feeling sealed inside – In an attempt to keep the heat in and save money on the heating, we keep the windows and doors closed as much as we can. And while that does the job we’re trying to do, the side effect is that I often feel a bit claustrophobic, like I’m sealed into my house with only the same air circulating (obviously this isn’t scientifically true or I would’ve suffocated long ago). And that feeling really stresses me out. Mum has taken to leaving the windows cracked open at night to get some fresh air in, which does help, but the feeling does still start to creep in by the end of the day. So I’m still working on that.
  • Less light, more darkness – While I like how cozy the house feels when it gets dark early, I do sometimes find it stressful; it feels like the day is actually shorter and I have less time to get done everything I need to do. Plus, autistic individuals are often low in Vitamin D so with fewer daylight hours than usual, that can become a bigger problem. I’m already low in Vitamin D so I take a supplement prescribed by my doctor to avoid a serious deficiency that could cause health problems.

I don’t know if this is helpful but when I sat down to do some research for this post – to see what other autistic/neurodivergent individuals find good and difficult about winter – I couldn’t find anything for autistic adults. Everything I found was directed at parents helping their children to adjust to the change in season but that doesn’t just go away as we grow up, although the challenges might change. So, since I couldn’t find a single post or article relating to adults, I felt it was all the more important to write something on the subject. So I hope this has been helpful in some way. Let me know what you would include on your list or how you manage the seasonal change!

World Mental Health Day 2021

‘MENTAL HEALTH IN AN UNEQUAL WORLD’

As I’m sure many of you know, today is World Mental Health Day and the theme, chosen by the Mental Health Foundation, is ‘mental health in an unequal world.’ WHO seems to be building it around the pandemic, rather than as a problem of its own, but from what I’ve seen in the newsletters and on the social medias of many mental health charities and organisations, most seem to be following the lead of the Mental Health Foundation.

According to the Mental Health Foundation’s website: “2020 highlighted inequalities due to race and ethnicity, sexual orientation and gender identity, and the lack of respect for human rights in many countries, including for people living with mental health conditions. Such inequalities have an impact on people’s mental health. This theme, chosen for 2021, will highlight that access to mental health services remains unequal, with between 75% to 95% of people with mental disorders in low and middle-income countries unable to access mental health services at all, and access in high income countries is not much better.” It goes on to say: “Many people with a mental illness do not receive the treatment that they are entitled to and deserve and together with their families and carers continue to experience stigma and discrimination… The stigma and discrimination experienced by people who experience mental ill health not only affects that person’s physical and mental health, stigma also affects their educational opportunities, current and future earning and job prospects, and also affects their families and loved ones.”

Statistics provided by Mind (x)


I have my own experience with the mental health system – which I do want to touch on – and have heard from many others about their experiences but I wanted to read into the research around these inequalities further, both to get a better factual understanding and to put my own experience in context (beyond an anecdotal one). The research is sporadic at best but here are some of the statistics I found…

ACCESS TO MENTAL HEALTH CARE

  • “NICE [The National Institute for Health and Care Excellence] recommends that people should be able to access services when they need them. However the proportion of people who felt they had definitely seen NHS mental health services enough for their needs reduced from 47% in 2014 to 43% in 2018.” (x)
  • In 2020, it was reported that approximately 1 in 3 people who experience mental health problems are able to access the support they need. (x)

From these statistics, it’s clear that far too many people aren’t getting the support that they need.

INEQUALITIES IN ACCESS TO TREATMENT (x)

  • For those with common mental health problems, 36.2% reported receiving treatment.
  • Women are more likely than men to receive treatment for all mental health conditions, with 15% of women receiving treatment compared to 9% of men.
  • Young people aged 16-24 were found to be less likely to receive mental health treatment than any other age group.
  • White British people are more likely to receive mental health treatment (13.3%) compared to BAME groups (7%). The lowest percentage of people receiving treatment were those from black ethnic minority groups (6.2%).

These statistics clearly show the disparities in the availability of treatment, more supporting evidence for the statement that the Mental Health Foundation is making with the theme for this World Mental Health Day.

YOUNG PEOPLE

  • “There is very little national information about mental health services for children and young people, and what information there is suggests quality is declining. [Research] indicates substantial cuts to services, increasing demand, increasing thresholds for treatment, very long waits (more than a year) for specialist services, and a resultant decline in accessibility.” (x)
  • Approximately 1 in 3 children and young people with a diagnosable mental health condition get access to NHS care and treatment. (x)
  • More than 338,000 children were referred to CAMHS in 2017, but less than a third received treatment within the year. (x)
  • Around 75% of young people experiencing a mental health problem are forced to wait so long their condition gets worse or are unable to access any treatment at all. (x)
  • In a YoungMinds survey, three-quarters (76%) of parents said that their child’s mental health had deteriorated while waiting for support from Child and Adolescent Mental Health Services (CAMHS). (x)

This research all indicates that young people in particular are being let down by the health care system.

SECONDARY [LONG TERM] CARE

  • Demand for secondary care (which generally treats people with severe mental health problems) is increasing, and there is evidence to suggest services are becoming less accessible… There is little information available on the outcomes that services achieve.” (x)
  • “There is no high quality national information on waiting times for secondary mental health services. In a 2014 survey, 20% of people with severe mental illness who were offered talking therapy reported waiting more than a year to access it.” (x)

The statistics show not just that the need for mental health care is increasing but the need for long term mental health care is increasing but that it’s also very difficult to access.

HIDDEN WAITING LISTS (x)

“A study of 513 British adults diagnosed with a mental illness also reveals the damaging consequences that hidden waiting lists – the wait between referral and second appointments – have on the lives of patients living with severe or common mental illness.”

  • “Of those on a hidden waiting list, nearly two thirds (64%) wait more than four weeks between their initial assessment and second appointment. One in four (23%) wait more than three months and one in nine (11%) wait longer than six months.”
  • Respondents living with severe mental illness – including eating disorders, bipolar disorder and PTSD – were left waiting up to two years for treatment. Others were left waiting up to four years for treatment for depression, anxiety and suicidal thoughts.”
  • Two-fifths (38%) reported that they, or someone on their behalf, had contacted emergency or crisis services while waiting for their second appointment, while 39% said that waiting led to a decline in their mental health.”

It’s clear that, beyond the difficulty of even getting into the mental health care system, once in it, the process of actually getting the support you need is much too slow – so slow in fact that it’s exacerbating the mental health problems that those waiting are seeking help for.


Now I want to look at my experience of getting support for my mental health…

  • For more than two years, I was repeatedly dismissed and had my feelings and experiences invalidated by multiple doctors and services. No one took me seriously. Eventually, my Mum took me to a private psychiatrist and I was diagnosed with Generalized Anxiety Disorder, Social Anxiety Disorder, Depression, and OCD. Having had no idea what I was struggling with, I’d done a lot of research and asked about the quiet presentation of Borderline Personality Disorder, which my psychiatrist initially rejected but then reconsidered and diagnosed me with it after reading my research and personal notes (it has since been recommended to me multiple times – sometimes by doctors who don’t even know me – that I have this diagnosis removed from my file because “people might make assumptions”). Getting an NHS referral for an Autism Diagnostic Assessment was similarly difficult as he felt that I didn’t fit the classic presentation (I do apparently fit the classic FEMALE presentation though).
  • There was no follow up after this diagnosis and we were told there was no support available so my Mum investigated private therapists. I tried CBT for a while but didn’t find it helpful so I tried DBT instead, which has been a much better fit.
  • All of this private treatment is obviously not cheap and I am so beyond grateful that my family is fortunate enough to support me financially. I honestly don’t know where I’d be without it, whether I’d even be here. But the cost of it does cause me significant worry, only adding to the anxiety I already experience.
  • With so many of my problems connected to my Autism, had this whole process been… easier, simpler, quicker, less traumatic, or something… so many of my health problems wouldn’t have deteriorated to the level that they have. Had I been diagnosed earlier – had even one medical professional believed me – things might’ve been so different. I try not to dwell on that because there’s no point wasting my energy on what might have been but it is the truth.
  • Having said that, considering some of the stories that I’ve read or have had shared with me, my story isn’t that bad. I’m positively lucky compared to some and that’s a confusing, complicated thing to say, knowing how traumatic this has all been… and continues to be.

Since then, I’ve developed near constant chronic pain throughout my body – something that’s obviously had a big impact on my mental health – but over a year later, I’m still waiting for the NHS physiotherapy and hydrotherapy referrals to go through. I have started Occupational Therapy and with the Pain Clinic (both through the NHS) but with the end of my Masters, I had to take a break because they were too painful and/or upsetting to manage alongside all the work. I’m starting back this week. It still bothers me that no one’s ever even tried to find out why the pain started though.

Almost six years after my ASD diagnosis, the Neurobehavioural Clinic called to offer me an appointment, to do what I had no idea. But at the end of the two part session, I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome and ADHD – aged twenty six – both conditions having gone unnoticed because no one had ever taken my associated problems (problems that have been there my whole life) seriously. They’re both conditions that often occur alongside ASD. The hEDS diagnosis would, in theory, push my physiotherapy and hydrotherapy referrals but, as I said, I haven’t heard anything and almost a year later, my ADHD is still untreated. My psychiatrist was happy to ‘move’ that condition to his care but the consultant I saw didn’t want that, which is especially frustrating because she’s so difficult to get in contact with.

And finally, I may be getting answers to another ongoing medical problem: severe dizziness, light-headedness, nausea, physical weakness, and breathlessness when I stand up for too long. We’ve been trying to get support around this for so long that I can’t even remember when it started. This too may well be related to my Autism and I can’t help thinking that it’s another thing that should’ve been discovered sooner.

All of these things have had a profound impact on my mental health and going through the agonising process of diagnosis again and again has left me wary, fearful, and angry at medical professionals. It’s deeply ingrained in me to be polite and respectful but it doesn’t take much to send me flying off the handle; I walk into each appointment feeling like a tightly coiled spring. I leave pretty much every appointment in tears at best, raging at worst. Because I’m so. freaking. tired. of feeling like this. Of feeling like no one believes me, of being made to feel like I don’t know what I’m talking about, of being made to feel like I don’t know what I’m feeling. I feel so worn down by the constant let downs. At this point, I think I’m only going back because I don’t know what else to do.


I have no doubt that social media will be filled with nice words and encouraging quotes today. But we need more than that. World Mental Health Day is about more than that. Or it should be. It should be about pushing for change and improvement. The Mental Health Foundation is absolutely right that the inequalities in the mental health care system need to be addressed but looking at these statistics, it’s also clear that the standard of care needs to be better. For everyone’s sake. After all, there’s very little difference between not getting any support and being on a list waiting years for support.

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