World Mental Health Day 2021

Posted on October 10, 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.

Category: about me, adhd, anxiety, autism, bpd, depression, diagnosis, emotions, heds, medication, mental health, ocd, research, therapy, treatment Tagged: accessibility, adhd, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, borderline personality disorder, bpd, camhs, cbt, chronic pain, dbt, depression, diagnosis, diagnostic process, eds, ehlers danlos syndrome, gad, generalized anxiety disorder, heds, hypermobile ehlers danlos syndrome, medical trauma, medication, mental health, mental health awareness, mental health care, mental health foundation, mental health in an unequal world, mental health in the media, mental health services, mental health stigma, mental health treatment, mental illness, mental illness awareness, mental illness stigma, neurodiversity, nhs, obsessive compulsive disorder, ocd, private health care, private mental health care, private psychiatric care, research, social anxiety, social media, statistics, stigma, therapy, wmhd, world mental health day, world mental health day 2021

How I Improved My Social Skills

Posted on April 3, 2021

Since I wasn’t diagnosed with Autism Spectrum Disorder until I was 20, that meant two decades of struggling and struggling particularly when it came to social skills. But despite finding socialising awkward and stressful, no one ever thought much of it. At most, I was labelled extremely shy. The idea that I was autistic simply did not exist – I didn’t behave according to the stereotype so it was just never considered. But still I struggled. So I thought I’d share how I coped with that and what strategies I employed to make socialising easier. Hopefully they’ll be helpful to some of you. Having said this, these are very specific to my experience, the areas in which I function better, and the areas I find more difficult so they won’t necessarily apply to everyone. But I thought I’d share them just in case, just in case one person finds one example helpful.

As I said, I found social skills very difficult to make sense of as a child and teenager. I found it difficult to process and participate in conversations, for example, making friendships and school relationships potential minefields. So, to compensate, I paid great attention to how other people behaved and interacted, analysing and cataloguing it until I had somewhat of an internal database to draw from. Having said that, I don’t think it’s as simple as just copying other people, at least not for everybody; for me, I think the fact that I’ve always done a lot of writing has had a significant impact on my speaking abilities: it taught me a lot about language, about the flow of words, etc. In a sense, it was like practicing social interaction by myself.

There is definitely an element of ‘masking’ (artificially ‘performing’ social behaviour that is deemed to be more ‘neurotypical’ or hiding behaviour that might be viewed as socially unacceptable) when around people but that’s something I want to talk about in a separate, more in depth post. This is not a post that will teach you to mask (something that can be helpful in certain circumstances but become detrimental over extended periods of time); it’s a post containing some tips and tricks that, over the years, I’ve found to be helpful in make socialising less stressful.

Diagnosed as a teenager and older, it can be very difficult to find support and strategies as most of the information is dedicated to young autistic children and the parents of autistic children. So, for those of us diagnosed later, we’re forced to learn how to cope in social situations by ourselves. These are some of the things I personally did to improve my social skills…

Eye contact – I’m still not very good at eye contact because it makes me feel so vulnerable and overwhelmed, like the other person can see what’s going on behind my eyes or like I’ll be able to see all that’s going on behind theirs. So mostly I rely on short bursts before looking at something ‘relevant’: my drink if we’re at a cafe or the ground if we’re walking, for example. But if I really do need to make eye contact with someone for longer than feels comfortable, I use the strategy of looking at a particular feature on their face so it still looks like I’m looking at them. I want to make that connection that eye contact creates (and I want that for the other person too) but sometimes it’s just too overwhelming and this seems to be the next best option.
Making conversation with people – I find meeting new people really hard: they don’t know anything about me and I don’t know anything about them. How do you understand someone when you don’t know what makes them who they are? But then I also feel kind of suffocated by all of that information. As you can imagine, it’s a pretty overwhelming situation. So, as a teenager, I started developing a script for starting conversations, a way of breaking the ice that proved to work well. I tell the person I want to talk to something I like about what they’re wearing or doing (if they’re drawing, for example) and ask them a question about it. As human beings, we like to talk about things that matter to us or that we’re passionate about and most of the time, this method sparks the beginning of a conversation, which makes continued interaction easier as you now have a positive foundation.
Official conversations with unknown people – I find conversations with, for example, people in authority positions pretty challenging so I’ll often spend time beforehand, running through possible different branches of the conversation, ordering my thoughts in areas that are likely to come up, and generally making sure I’m clear about the information I want to get across and/or the questions I want to ask. That preparation makes the conversations easier and less overwhelming and ultimately lead to a more positive outcome. I (or my Mum) have, in the past, contacted whoever it is that I need to speak with to find out what sort of information is likely to come up if I’m unsure so that I can prepare and most have willingly laid out how the appointment or meeting etc will likely take place.
Allow yourself to take a backseat in conversations – It’s perfectly okay to not be an active participant in social interactions all of the time; it’s okay to be a part of conversations without being (one of) the main contributors. If the topic being discussed is confusing or emotionally charged or you’re feeling drained, there’s no rule that says you have to engage. It’s perfectly fine to sit out for a bit of the conversation and rejoin when you feel comfortable or like you have something to offer.
Disclose your Autism if you feel comfortable doing so – I can only speak from my experience but I’ve found that people are a lot more likely to overlook my social stumbles or support me through social interactions if they understand the basis of them, as well as making sure they’re clear about what they’re saying and the emotions behind it. I’ve also found it can strengthen friendships to share about your Autism but this is obviously a judgement call and a very personal one at that.
Let people in – Similar to the above point, sharing your way or the ways you’ve developed to communicate can be really important and create a really strong connection within a friendship. So, if you’ve developed your own way of describing things (the way I talk about production in music and how a song can have too much of a particular colour, for example), explain it to them if they ask what you’re talking about. Sharing things like this can add something special to a friendship, or any kind of relationship.

I spent the majority of my life stumbling awkwardly through social interactions but once I discovered that it was due to being autistic, I felt a lot less self conscious about it because I understood where it was coming from. And while I can’t and don’t intend to speak for anyone but myself, I’ve had very few negative reactions to disclosing my ASD in social situations. The majority of people are, at most, curious and want to understand; many people barely react. But the fact that many of the people I talk to know that I struggle socially and may mess up (and sometimes fall spectacularly on my face) is comforting. I don’t have to worry about what they’ll think of me. I’m still me, whether I’m articulate or flat on my face.

Everything Changed For Me This Year (Autism Awareness Day)

Posted on April 2, 2021

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.

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