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.

Happy Birthday, Claire

TW: terminal illness and death.

Today is what would’ve been Claire Wineland’s twenty-fifth birthday and even though she died in 2018, I still think of her often. I wanted to do something for her birthday and since I hadn’t yet watched the documentary about her that was released after her death, I decided it was time to watch it, even if it would make me cry (not much of a spoiler: it did). She was an incredible person and it breaks my heart that she’s no longer here, that she didn’t get the chance to live a life she fought so hard for and saw so much potential in.

As I said, I wanted to honour her birthday so I sat down and watched the documentary; here are some of my thoughts…

It’s a beautifully made documentary and a beautiful tribute to Claire and the message that she dedicated her life to sharing with people. You get a real sense of her: she’s so articulate and eloquent but she doesn’t take herself too seriously (and ‘Little Claire,’ as she refers to herself, is so cute). So much of what she said was so poignant and moving and, as always, I felt deeply inspired by her words. It also gives you real insight into what living with Cystic Fibrosis is like, as much as you can as someone on the outside, and while her experiences are very specific to Cystic Fibrosis, I could also see a lot of broader parallels as a person with multiple disabilities.

I found the second half (approximately) especially emotional because I remember experiencing it in real time: watching her videos, donating to her gofundme and watching the total rise and rise, watching her live on social media when she got the call from the hospital for the transplant, waiting for news, and then finally hearing that she’d died. I remember it all so vividly. And seeing the video about needing new lungs now, hearing her say, “There’s so much more I wanna do,” makes me so deeply sad because everyone was so hopeful throughout the transplant process but then, suddenly, it was over and Claire was gone. There was so much she wanted to do and she truly saw how much she could do in this world and she didn’t get the chance; that still makes me so very sad.

The montage at the end was gorgeous and the ending was perfect. As I said, it’s beautiful and I feel like, as familiar as I was with Claire’s videos and therefore her approach to life and so on, I walked away from the documentary with a better understanding of her and her message.

There are so many great quotes throughout the documentary but here are a few that stuck out to me…

  • “The truth is: people who are sick, people who have suffered have something beautiful to give to the world. So, for me, it was really important to see people who were sick who were thriving… It’s important to have people who are sick who are actually living full lives so that kids like me, like Little Claire, doesn’t have to feel like all there is in the world is being someone’s pity case. You know, that there’s a life for her to live. And that it’s going to be wonderful.”
  • “Innovation doesn’t happen because there’s some person who’s in a great circumstance and everything’s going well and they just get on a roll and they make something for the world. Innovation happens, art happens, because of suffering.”
  • “We’re all just trying to not feel so alone and to feel like we have something that is worth giving.”
  • “There’s this notion that we go through life with that, if we’re just better… If we just do more, if we just fix ourselves more, if we become better people, if we get healthy […] Once you’re healthy, then you can live your life. Once you’re healthy, then you’ll be happy. Once you’re healthy, then you’ll be okay. And we all go through life like that, not just sick people… all of us. Like, once we’re rich we’ll be okay; once we’re in love we’ll be okay; once we have a family, we’ll be okay. Health itself is never gonna make your life better but for some reason, people don’t wanna frame it that way. If I was to sit here and say, ‘money doesn’t equal happiness – it’s what you do with the money,’ you’d be like, ‘Yeah, completely.’ But if I was to say, you know, ‘being healthy doesn’t matter – it’s what you do with the health…’ People don’t like hearing that necessarily.”
  • When talking about her near death (and actual death) experience: “And after the terror left, there was this grief, you know? Like, I grieved how much potential there was in me and how much of that I didn’t utilise in the time I had. And I grieved it. It wasn’t fear. It wasn’t, like, ‘Oh god, I don’t wanna die.’ It was, like, ‘Wow. There is so much that a human being is capable of doing and I won’t be able to do that.'” [This moment made me cry and seeing that the memory moved Claire to tears as well made me so incredibly sad and touched that it was something they shared with us; it was very moving and had a big impact on me.]
  • “For me, what purpose really meant was changing the conversation around someone who’s sick where they have to wait and wait and wait until the day that they’re healthy before they do anything, to this notion that I could be exactly who I was in the moment with all of my mess ups and my failures and my pain and my complications, that I could be a sick person and still have something to give, still have a life worth living.”
  • “Ever since the time I was a kid… and I think everyone has this experience… you’re taught that someone else is gonna do it, there’s someone else who knows more than you, someone else who can do this better, you’re not there yet, you’re not ready. And I realised that I can’t spend my entire life waiting for someone to give me permission to live a life that I’m proud of.”
  • “I think everything good in my life has come from my sickness and that’s a terrifying thing to admit to someone because then, you know, what else is there?”
  • “There is a really fine line between wanting something because of what you can give with that thing versus wanting it because you think it’s gonna make life better.”

I will also be making a donation to Claire’s Place Foundation as well. Claire had a profound effect on my life and I want to pay that forward. I’ll never been able to thank her for how she’s helped me but I can do my best to follow the example that she led by, to follow the message that she embodied.

I really recommend watching this documentary, especially if you or someone close to you is living with a serious illness or disability. Having said that, it’s very emotional so please take care of yourself if you’re going to sit down and watch it.

I’m sending all of my love to Claire’s loved ones, especially today.

Parenting a Young Adult With Autism Spectrum Disorder: I Interview My Mum

Since this is my blog, the experiences are predominately from my point of view but I thought it would be really useful, as well as interesting, to get a different perspective on the same scenario. So, with that in mind plus the fact that most resources are aimed at the parents of young autistic children, I asked my Mum if I could interview her about what it’s like to be the parent and often advocate for a young adult with Autism Spectrum Disorder. I came up with a list of questions and she answered them. I had almost no input on her answers, only to ask for more information or detail if I thought she hadn’t fully answered the question or finished a thought. We’re hopeful that this could be of some help to parents with adult children managing a form of Autism.

I’ve talked about what it was like for me to get a late diagnosis but what was that experience like for you?

The process of getting a diagnosis for you was frustrating at best and distressing at worst. You were very clear about your need to know the causes of your difficulties and so refusal from medical professionals to engage with that need was hard to witness. I needed to do the research, follow up possible assessments and/or therapies and talk about your challenges against a backdrop of suspicion of being overprotective and a distrust of my motives. Even when it became clear that your inability to talk for yourself at the outset was a result of Selective Mutism and your experience with those professionals, I was still met with a resistance to engage with me on your behalf.

Although I’m more able to speak for myself now, what has it been like having to do so much advocating for me?

It always felt like it was my role to do this until you were able to do it for yourself. I wasn’t trying to fix things, just get your voice heard, your experience understood so that the problems you were facing could be addressed and the right support provided.

I knew all the answers to questions you were being asked because we’d talked about it all beforehand. Both before and after your diagnosis, it has just felt like I can be the means to you being heard and hopefully understood as and when you are not able to do it yourself.

As in your first question, this doesn’t always work! And I do often feel frustrated by a refusal to accept my intentions, confusing it with a reluctance to ‘allow’ you to speak for yourself/become independent.

Knowing me but having an outside perspective, what would you consider to be the positives and negatives of having Autism Spectrum Disorder?

This is really difficult for me as all I see is YOU, with all your qualities and all your challenges. Combine this with the fact that each person with ASD presents so differently and I do find it difficult to generalise. Understanding more about women on the spectrum now, I see your very singular focus on anything you set out to do as a positive. I think your intense empathy is a double bind, giving you a compassion that can then often be overwhelming. The biggest negative I see is your level of anxiety. This is often debilitating and always massively exhausting and affects most aspects of your life.

How do you think things would’ve been different if my ASD had been recognised when I was younger?

This is a little easier to answer as I think, from all I see now, knowing about it earlier may have enabled us to access support for you and given you access to specialist resources. Having said that, I wonder if a diagnosis earlier might have ended up giving you a label that meant expectations, both your own and society’s, may have been different for you. Increased awareness of and understanding surrounding neurodiversity is relatively recent.

What do you think is the most important skill or trait when it comes to parenting a young adult with ASD?

This question makes me want to ask you what you feel has been most important but my sense is that being there for you, trying to put aside any preconceptions and opinions of my own so that I am able to really listen and hear what you are telling me, leave aside any of my own anxieties or fears, to support and encourage you to do what you want to do; a combination of protection when things are tough and support to push forward when you feel able.

I also feel it has been important to be prepared to read and research for myself and learn all about the condition so I can share this whenever it feels necessary to inform the argument for support. And to be prepared to persist when first attempts are met with a negative response.

I’ve often talked about feeling like a burden for not moving out or contributing more as a young adult. What are your thoughts on this?

In answering this, I would like to reference a quote here, which I think explains how I feel about this. I found this during one of my searches and thought it was a positive recognition of the difference I see and how it affects your life in the sense of the ‘what’ and ‘how’ you contribute and participate. Keri Opai, a Mental Health Service Award Winner in New Zealand, consulted the Maori disabled community in order to develop variants in language that differ from what he called the “sometimes condescending English terms,” and instead emphasised the ‘gaining [of] strength and ability.’ So the word for ‘disabled’ itself is ‘whaikaha,’ which means to “have strength or to be differently able.” He also spoke of people with autism having ‘their own timing, spacing, pacing and life-rhythm’ and so interpreted autism as ‘takiwatanga,’ meaning ‘in his or her own time and space.’ (Te Reo Hapai, the Language of Enrichment by Keri Opai)

I do understand that you feel this way though but I know that you do what you can when you can, and that this inevitably fluctuates according to what you have going on at any particular time. With the anxiety and fatigue you experience on a daily basis, and your focus being studying at the moment, it just doesn’t make sense that you do more than you are able to, nor that you would move out to live independently, with all the extra demands that would make on you, yet. There is plenty of time ahead for that. Until then, I get to enjoy your company and give you the support you need.

I’ve been taking various medications and going to different forms of therapy for years now. What do you think have been the effects of those, positive and negative?

I have always felt that it would be a combination of therapy and medication that would be likely to be the best way forward, and I think we both agree now that this has been the case. It was challenging to find a therapist that you felt able to work with but once we did, we knew instantly that you could start moving forward, in your own time and in whatever way felt possible, something your therapist has always supported.

Regarding medications, I do have concerns about their effects on you physically as well as mentally and appreciate that living together does mean I can help monitor these effects and see patterns and changes that maybe you can’t.

What do you think the hardest part of living with ASD is? 

Again, looking at you, I would say that the hardest part for you, of living with ASD, is the sense of feeling different and feeling left behind your peers; and watching you being so exhausted by managing the mental health issues that have troubled you as a result of the late diagnosis.

Do you feel your life is different because I’m autistic?

Yes, my life is different to what I had expected it would be at this point, but then so is yours. But we deal with that, and make it the best we can, for both of us.

What has been or is the hardest part of parenting a young adult with ASD?

I have often felt very isolated, and criticised for continuing to be your voice when you are not able to speak. And I do worry about the barriers you may face in a world that does not always recognise the assets and abilities of neurodiverse people, expecting autistic people to change rather than have society change the many inhospitable or incompatible environments and expectations that may hinder them.

What help/advice would have been helpful to you at any point?

All the way through… someone willing to believe in my intentions and acknowledge that, I, as a parent, only have your best interests at the core of everything I do.

So hopefully her responses to these questions have been helpful or reassuring to the parents among you guys. During this process, she actually realised that she had questions for me so we decided to do the same thing in reverse and that post will be up tomorrow!