“What I'm realizing is that if you're quiet about the things that hurt you, people are only going to mistake your tolerance for permission.”
Ann Liang
When I read that the theme for World Mental Health Day (WMHD) this year is ‘lived experiences heard: real voices, real change’ I was really excited to get started on some content! I say that because it’s a topic – speaking up about mental health – that's very obviously hugely close to my heart, and not just in my career as a mental health Influencer, but also in a more personal and individual respect too. Since the day I created I’m NOT Disordered back in 2013, I have been using my voice to try to achieve a number of different goals that have wildly changed and grown over that time. And I honestly believe that if I hadn’t achieved the things I have over the years of using my voice, I might not be here. Speaking up has helped to define me as a person, helped me to discover my purpose, to create my career, and to leave me with the distinct feeling that the hardships have been worthwhile. With that fundamental impact on my recovery, I wanted to put this blog post together on using your voice in mental health by providing information, understanding, awareness, my own experiences, and tips learned from them of one of the key methods of using your voice that I feel I’ve engaged in the most: providing feedback...
Whilst ‘feedback’ can be both negative and positive, I did actually write a blog post a few years ago titled: Everything You Need to Know About Making A Complaint but I do have a mindset that’s all about how – arguably – so many people will very simply and easily register or lodge complaints, but that they rarely make the same level of effort to simply say thanks or to say what was done well or what went right. And I would argue that both forms of feedback are just as important as each other! Complaints can – or at least they should – provide motivation and an opportunity to learn from a mistake or failure so as not to repeat it. In contrast, compliments can provide the chance to do more of or learn more about what was done right and to then do it more often.
The most important aspect of providing any kind of feedback (positive or negative), in my opinion, is both deciding whether to do it and determining why you want to do it. With this, as a sort of general rule for using your voice in mental health, I’d say you should always ask yourself three questions to help you decide on these two factors:
What has happened to me?
What would I want to have been different?
How can I change it for others?
Finding the Words to Tell Your Story
In that first question, you will likely be left trying to word or explain – even just to yourself! – what has happened to you. Even as someone who is frequently described as ‘articulate’ and that I have a good ‘understanding’ of my mental health, I still come up against instances where I’m like ‘where do I even start in wording that?’ And, being able to ‘understand’ my mental health is something which, in all honesty, I feel I have almost been forced to learn how to do because before I could, I was often misjudged, poorly treated, and labelled as things I’m not e.g. an attention-seeker, drama queen, and liar.
I came to realise that unless I could put my difficulties into words so that the professionals could make some sort of sense from them, that bad treatment and horrible attitude from services would continue and it was already making my suicidal thoughts, feelings around self-harm, and memories of the trauma even harder to defy or cope with. So, I couldn’t even imagine how much longer I could tolerate that for. Of course, this isn’t the best situation or circumstance to have found my voice, like feeling that I was backed into a corner in order to do it. But, nevertheless, that happened and I do feel somewhat grateful that at least I found it and started to use it in a way that was effective because it corrected the way I was being treated by professionals and services – particularly Police and the Crisis Team, in all honesty (which is why one of my earlier blog posts back in 2014 was actually: A Letter to The Crisis Team).
Here are some tips to cope when you feel any sort of pressure or obligation to use your voice:
Having a story doesn’t create an obligation to tell it – remember your voice belongs to you
Your trauma doesn’t have to be useful to others – you don’t have to be an advocate
“I’m not ready!” is a valid thought or feeling to voice – silence is a choice, not a failure
Don’t compare your voice with anyone else’s
Don’t let any pressure to speak become another source of distress
And then, here are some tips to find the words to use your voice in a way that shouldn’t feel forced, compulsory, or in any way obligated:
Start with the facts
Separate the facts from how they made you feel/the impact they had on you
Don’t underestimate the power of ‘simple’ and singular words
If you can’t find the word, describe the feeling instead
Structure it into before, during, and after
Think about what you needed but didn’t receive
Don’t forget about the positives and what made a good difference to you/the situation
It’s ok if you can’t remember
Use comparisons if that helps
Give yourself permission to change your words if they stop feeling fitting or effective
I’ve spent years evaluating my blog’s popularity and success through various blog posts at multiple moments in my career – but particularly at reader statistic milestones e.g. How Did We Get Here? | 1.4 Million Readers – but I think the largest reason my blog has become all that it has, is that it was in no way forced. Ever. Throughout its entire thirteen years, I have never felt any sense of ‘I have to blog about that’ or ’I can’t just, not blog’ due to anyone else. I’ve always made the decision to create a certain piece of content or to have to find the motivation to continue blogging. I’ve never let or had anyone put any sort of pressure on me.
I won’t lie; that’s been hard; just because those things haven’t happened, doesn’t mean they haven’t tried to! I think that the risk of any pressure around creating content is mostly born from the odd comment from a whole variety of people who have, mostly, innocently made various comments. It is usually when something perhaps fairly big or important has happened in my life and the odd person will say, “you’ve got to blog about that!” or “blogging about that will help so many people!” And I sometimes just want to scream: “it’s got to help me to do it!” Because that’s usually my criteria for whether to write about something is that I find it useful to create the content. That doing it helps my mental health, teaches me a new skill, inspires or gives me information for additional content ideas, or just encourages me to do some research (I’m strange and love doing research!) I wouldn't have otherwise done, etc.
I would never create content that I felt backed into. And it’s actually not even honestly and totally about a moral thing – it's not completely related to the fact that I believe creating content that you don’t believe in, don’t want to create, or don’t enjoy creating is simply wrong. It’s actually also related to my belief that so many of your readers or followers – especially long-time ones and ones who might also know you personally – can tell when content has been created in that way or with that background and that this will often result in it receiving some sort of poor response; whether through a lack of views, a lack of engagement or a hoard of negative engagement e.g. horrible comments or unfollows, or just a newly developed poor opinion or criticism of you, your platform, and your content.
Triggers & Reminders from Using Your Voice
Now, the second question (what would I want to have been different?); this one begs a bit of a chat about being mindful of reminders and how to learn coping skills for feeling triggered by recounting difficult, upsetting, overwhelming, or even traumatic experiences and instances. Even if you’re telling your story via typing on a laptop – you don’t have to be talking to a crowd or even to a select amount of people in person – to find what you’re saying triggering of old thoughts and feelings that you perhaps experienced when what you’re talking about actually happened. Simply reminiscing and thinking back to a hard time in your life can be enough to influence any sort of upsetting reminders of that time that could really leave you desperately trying to cope with them in unsafe or unhealthy ways.
So, firstly; here’s some tips on how to spot or develop an awareness of early warning signs that you’re about to or are at risk of becoming triggered:
Be curious about any patterns in your thoughts, feelings, and behaviours – this is mostly about coping mechanisms that you seem to resort to and in what situations you do.
Look for body changes that you may or may not be consciously aware of or recognise e.g. feeling cold, dizzy, sick, detached, having a headache, or feeling suddenly exhausted.
Notice changes in your thoughts because they might change, or you might find yourself struggling to concentrate before any triggered emotions become overwhelming.
Pay attention to emotional changes too by recognising if you’re feeling more emotional than usual in a situation, e.g. maybe you’re feeling numb, panicked, frightened, or angry.
Look at your behaviours but be mindful and careful not to find yourself judging them as ‘bad’ in any way, and instead ask ‘what might this behaviour be trying to tell me?’
Learn your personal triggers e.g. a certain place, a smell, a name, or a topic and be aware that sometimes realising the connection doesn’t happen until it’s occurred multiple times.
Now, here are some tips on coping with your early warning signs:
Tell someone you trust what your signs are.
Don’t wait until you’re at a point of crisis to ask for help or support.
Remember that recognising it doesn’t mean you’re failing – view recognition as an achievement.
Create an early warning signs checklist including thoughts, emotions, and body sensations.
Keep a simple ‘what-happened-before’ diary which doesn’t have to be long, to identify triggers.
Now, in making or experiencing these recognitions of signs you’re struggling, are going to struggle, or are triggered, it’s important not to let the fear of that happening silence you and stop you from using your voice. Protecting yourself and staying silent aren’t always or necessarily the same thing. An essential question to determine this is to ask yourself, “am I not speaking because I genuinely don’t want to or because I’m afraid of what might happen if I do?”
It’s important that you don’t let the fear of feeling aware of what might happen to become an automatic sign or reason that you can’t do something. As though ‘I know if I say this, I’ll feel scared’ just naturally means you can’t say it. If you have coping skills for being triggered and you judge yourself as feeling safe and confident enough in those mechanisms, why should the awareness or fear prevent you or control you from completely not being able to do it?
And in keeping with this thought process, there doesn’t need to be an all-or-nothing approach in so far as speaking too – it doesn’t have to be complete silence or tell the entire story with all the details possible. Perhaps a coping skill could mean judging some sort of measure on how much detail or information to disclose in continuing to use your voice with the risk of becoming triggered. Perhaps restricting yourself to a level of your choosing could help you to cope with the thought of what might happen.
Goals for Using Your Voice
Now for that third question (how can I change it for others?) – this really speaks to talking a bit about goals in using your voice...
Ultimately, my largest piece of advice around creating or setting any goal in life, is to do so by applying the SMART framework which is where you use a basic format to provide or establish more detail in your goal and it stands for (plus! Here’s what to ask yourself at each stage in order to inform your goal more):
Specific – what exactly do i want to change or encourage?
Measurable – How will I know I'm on my way to achieving it?
Attainable – What is realistically in my control?
Relevant – Why does this matter to me?
Time-Bound – When will I take my first step?
For me, in using my voice (particularly concerning providing feedback) my usual, ultimate goal, is to avoid any negative things that happened to me, from happening to other service users too or, to spread and raise encouragement for the positive things that have happened to me, to be done more often. So, the ‘attainable’ stage of creating a SMART goal has been absolutely fundamental for me in realising whether I’ve been too imaginative, unrealistic, or bitten off more than I can chew. And initially, I did have the attitude or question whether you can ever dream ‘too big’ and ‘how helpful is it to draw that imagination in?’ but this isn’t about ‘dreaming’. This is about setting a goal. And – to me – there’s nothing like ‘done’ than what comes from deeming a goal to be accomplished, and how can it ever be achieved if it’s regarding something out of your power and control? If it’s something you physically or practically can’t do, how will you ever do it? And that, for me, was the groundbreaking mindset which led me to accept and recognise the power and usefulness of a goal being attainable.
Having mentioned your level of control over what is realistically attainable to change or have as a goal, to be honesty; I think that the only other piece of caution I could give here is about the other big lesson I've learnt in these being my own, frequent goals – always recognise, establish, and be mindful on just how much responsibility you don’t have for those changes actually being made too. You don’t even have the responsibility to use your experiences to help others never mind having any level of responsibility for professionals and services listening to you and making adjustments etc.
One area this massively hit me which I’ve actually never talked about was regarding the attitude, respect, understanding, and awareness, of Police around mental health. I spent years co-facilitating mental health training to the new recruits of my local Police force, I gave presentations at their events, I featured on their social media, and I published numerous guest posts by variously ranked Offices and Inspectors etc. (the best blog post which I think will also have the most information on my work with the Police, will probably be: https://www.imnotdisordered.co.uk/2017/09/from-cells-to-conferences-my-mental.html). Yet, a few years after all of that came to a halt, I found myself in a screaming match with an Officer who took me to A&E and fortunately all the Doctors and Nurses who came forward as witnesses for the complaint I lodged, found issue with the way I was being treated by the Officer too so I – thankfully – had a lot of support in speaking up against his bad actions and poor attitude.
But I can remember at one point in the screaming match, I had said I spent so many hours and put so much effort in to the helping to facilitate that training, but what had it done?! I’d spent a ton of my own time meeting with Police staff, talking to them about mental health, taking part in Q&A’s for my blog and for awareness date content... What good had any of that done?! And I wasn’t even looking for a ‘thank you’ or a ‘well done’ – I was looking for respect, to have been heard, to have been listened to, to have been understood, and to have been believed. I had simply wanted my experiences and the advice I was giving from them to have mattered in a way that I was being led to believe they were. I was being told it. I was receiving a ton of lovely comments and feedback; here are some of the tweets from their very large event I spoke at back in late 2016 (you can also view these in the original blog post: http://imnotdisordered.co.uk/2016/10/enhancing-multi-agency-partnerships.html):
Esther Beadle: "Important to realise we all have mental health, whether well or poorly." - Aimee Wilson on Northumbria Police video for #MH professionals #MultiAgencyNE
Claire Andre: Aimee Wilson is now telling us her story - she is giving us an honest account. #MultiAgencyNE
Old Bill (Scott): Aimee Wilson shares her recovery story (inc. Mindfulness!). Important to understand that people are NOT their diagnosis! #MultiAgencyNE
Nicola Morrow: Very moving account by Aimee Wilson - check out her blog www.imnotdisordered.co.uk #MultiAgencyNE
Sgt. Ash Hopper: Well done Aimee Wilson!!! Very brave young lady. Inspiring and teaching us professionals a thing or two! #MultiAgencyNE #imnotdisordered
Alison Booth: www.imnotdisordered.co.uk #MultiAgencyNE impressive lady.
Tony Gray: Well done Aimee Wilson thank you for sharing your experiences #MultiAgencyNE
Old Bill (Scott): Aimee Wilson addresses "attention seeker" & "aggression" labels. If suicidal, behaviours aren't always rational/explicable #MultiAgencyNE
Claire Andre: Aimee Wilson is talking about how damaging the 'attention seeking label' can be for a person. #MultiAgencyNE
Northumbria Police: Final speaker is the wonderful Aimee Wilson - an expert by experience and an #inspiration to us all #MultiAgencyNE
Claire Andre: Aimee Wilson says we need to improve by #partnerships and #WorkingTogether for the benefits of those we care for #MultiAgencyNE
Esther Beadle: "Don't blame each other," says Aimee Wilson. "It's not going to help the service User." - #MultiAgencyNE
Kirsty Smith: Aimee Wilson, really impactive to hear how agencies blaming each other can have a direct impact on service users' mental health #MultiAgencyNE
Old Bill (Scott): Aimee Wilson believes caged #police vehicles & handcuffs must be last resort for people in #mentalhealth crisis #MultiAgencyNE
Old Bill (Scott): (from Aimee Wilson) Providing continua reassurance to let people know that #police really are there to help is crucial #MultiAgencyNE
Esther Beadle: Aimee Wilson: Reassurance, especially on hallucinations and s136, is really needed #MultiAgencyNE
Old Bill (Scott): (from Aimee Wilson) Sometimes engaging in conversation helps drown out auditory hallucinations. Ask if it helps... #MultiAgencyNE
Devon and Cornwall Police Street Triage Team: Thank you, Aimee Wilson, absolutely vital to hear things from your perspective to help us all move forward. #MultiAgencyNE
CumbriaMHCop: Very moving talk from Aimee Wilson #MultiAgencyNE
Alan Lynam: #MultiAgencyNE ... fantastic personal account that shows the need for partnership working Aimee Wilson thank you
But when it mattered – when it was an actual mental health crisis? Their attitude and actions were really, ultimately, still the same. They’d learned nothing. The irony was, from delivering all those training sessions (in both the co-facilitator for Northumbria Police and the solo-facilitator role for the British Transport Police) I had still managed to learn more from them than those who were actually meant to be learning from the training! And if there’s any quality, I’d like to have that sets me aside from people like that, I would want it to be something like that – that where those that are ignorant, rude, disrespectful, assumptive, and lack understanding around mental health don’t, won’t, or can’t learn; I continue to. Whether that means learning more about myself, about my mental health and my experiences, thoughts, and feelings, or about my career and areas and skills within that, or about those people and others like them – how to cope with them, how to teach them better, and when to recognise there’s only so much you can do without it feeling like defeat.
That was key for me, recognising that professionals and services not changing despite my efforts, was not a sign of defeat nor evidence that I had failed. It was simply the realistic fact that goes back to the two aspects: I only have so much control over changes being made, and I can’t hold any responsibility for professionals or services changing – or not changing! – as a result of what I say.
Now, practically; if you can think of a service-wide change, you genuinely feel you can very really impact – or at least establish a goal – from using your voice in mental health, what can you do?
Check no one else is on it! Search Google, news stories, and social media to ensure no one else has already noticed this neglected area.
Find out who has the power to make the change you want to see, e.g. Chief Executive, a Nurse, or the Communications and Marketing team? – this will dictate who to contact.
Gather statements of support, alternative methods of thinking, etc. before you start putting together a big proposal to build evidence that also validates your thought process.
Determine the name/format of document the intended staff might prefer to see in their inbox and in regard to this type of service user involvement e.g. PowerPoint, Word doc, PDF etc.
Consider suggesting a Pilot for the system-wide change you want to see rather than a uniform big difference; this shows realism and eagerness to learn and perfect.
Now, you guys know I’m all about honesty so, when it comes to writing a report or proposal document etc. I would 100% admit to utilizing Chat GPT numerous times in order to simply build a contents page. I’ve never asked AI to write the pages or the entire document; I typically just like to ascertain and establish exactly what should go in it – especially when it’s to make some sort of suggestion or change, I’ve never worked on before. The last thing I’d want is to get a response saying, ‘this sounds great, but we’d have liked a such-and-such page!’ It’s something that can so easily be avoided from happening altogether, but not all that easy to rectify once the document is already submitted, and the missing page is pointed out or commented upon!
Here are some more tips to writing big documents because I would never want for it to be the thing that puts someone off trying to change the system for the better:
Always start with the purpose.
Create the contents page first.
Do one section at a time.
Research before writing.
Keep a document or spreadsheet of your sources.
Make your ‘ask’ very clear.
Write for the person making the decision.
Have someone proof-read it.