The need for Mental health representation and advocacy in our world today seems it is more important than ever. In our local communities off-line and international communities online, there is a lot of great work being done and often on a volunteer level. Personally I spent 3 years working in a community mental health centre doing volunteer work and fund-raising because the service I was working with gave me a ‘safe’ and validating place to be when I was at my lowest. It connected me with my peers and gave me a sense of belonging.
The invaluable time the support workers gave me, and often out of their own ‘well’ of mental health, was something that I always wanted to pay forward – whether that be from the helpful advice they gave me or their ears and their time. Their help enabled me to acquire the language and knowledge I can now use for myself and share with others.
Personally I have never wanted credit or recognition for what I have done, the expressions of gratitude when I have been able to help and knowing that I am making a difference in someone’s life, even if it was just for that moment, was usually more than enough to satisfy me. It also benefited my mental health a lot because I was always on this even footing with those who I was working with – because we both lived with mental health, we could recognize the struggles in each other and appreciated what that meant.
That is often the nature of charity, but also it does take from my own ‘well’ of mental health, which I do have to top up myself, especially financially – so I understand the need to be paid for your time, education and compensated for that care-giving role we have taken upon ourselves. So with that being said..
Fund-raising for NGO’s is no easy task, often falling to apply for funding through charitable trusts and generous donorship. With the great need in funding and the people to do the work. You are also competing with other NGO’s for that same funding. Many of the problems around all this in mental health support is simply because it is underfunded by governments and the people who do the ground work are overworked and underpaid. This also being an issue in the public health sector – leaving a lot of space for vulnerability for those who actually need the help and cannot get access to it.
I cannot count the amount of times I have had products and ideas pushed on me that is said to help with my ADHD, or my depression or my anxiety. Quick fixes, misinformation and very ableist ideologies lurk in this space and people are very ready to cash in on you when you are most vulnerable. Whether the intent is good or not, to get paid to promote that real information online often has led people to promote false information to get their attention (clicks/views/follows).
Most people are probably sensible about most of these tactics, but they don’t always come in the form you expect. Because with everything going on in the world and the raised awareness that mental unwellness is one of the biggest problems humanity is facing today. Many companies and brands are jumping on-board the ‘mental health awareness’ marketing campaign.
This month (October) is ADHD awareness month. I like the fact we have a whole month, as I think if it was just one day, we would forget. So kudos to whoever came up with that one, they definitely understand the nature of the beast. However, it is with these type of movements when they become topical and current, that misinformation and predatory behaviours occur as everyone bids for your attention (and money). It is apparent to me at least from my own observations from running a mental health advocacy platform and having that lived experience working in mental health care in real life – that many will take advantage of these trending topics in order to gain clout or popularity. Often with no intention of true advocacy and education. Meme reposting accounts being especially guilty of this.
The consequences of this is that those who are seeking help are not getting the right kind of help or information in order to support their well being. These actions have real life consequences as it can be a detriment to a persons mental health. And it’s very frustrating to witness this. This misinformation is often occurring in a grey zone or at least more about promotion and algorithms than actually creating real science based content. It is written or created in the lens of peer correlation and then promoted as fact. This is dangerous and is not helping the neurodiversity movement that we so deserve to have.
There needs to be a considered ethical boundary and disclaimers (I am not perfect for this myself as someone who shares memes but more on that in a moment). There is a lot of popular websites out there that people can easily come across from a simple google search that are disguised as professional medical advice. They use SEO, hash tags and influencer marketing in order to gain clicks. Often these articles are opinion pieces and they only cite themselves, so if you were to look for where they got their information from, it will only redirect you to another page on their website (more click bait). Then these articles are signed off as being reviewed by a psychologist alluding the viewer that this information is OK. That is not how the scientific method works or peer reviewed studies work.
Given that ADHDers will probably not pay much attention to that especially if it’s wordy and boring (but not always, as I quite enjoy reading and writing myself), it’s almost like “jokes on us, as long as we click”. They could promote or say anything when they have a large enough podium. This type of thing is so hurtful to us regarding making real life changes to the stigma associated with ADHD. All that is needed from these sources is to be transparent about it. Is this a blog? Then say so. Is this a magazine? Then say so. Otherwise cite accordingly.
The other thing that is happening especially with Memes and I can put my hand up here and say I am guilty of this myself (hence why I am writing this as I want to help curve any potential damage I have also contributed) is that a lot of viral memes that talk about topics like RSD (rejection sensitive dysphoria) for example are disguised as real medical advice and information. The fact is, that RSD is not a medical term, nor is it in the DSM. It is not something you can be diagnosed for. However – it is a very real, shared, peer correlated experience. I too (if you look at my older articles) also had this impression that it was an actual thing. Rejection sensitivity certainly is a thing, but what is not being said in the promotion of this information is the need for investigation. And the problem occurs when this could actually be Trauma instead. It is so harmful to a person to tell them that they have something they potentially don’t have and then never get treatment for what they do have. I would feel horrible myself if I knew that was the case, that I had said something or promoted something that could have direct impact in a persons life in a very negative way – influencing a person to not seek professional advice and therapy for that is not mental health advocacy. It’s actually straight up ableist.
The responsibility to promote correct information needs considered research or care. Otherwise a disclaimer. Consider information in 2 ways, is this peer correlated lived experience I am reading, or is it fact? The other thing that is not being mentioned in a lot of this shared online content is that the information is coming from lived experience and this presentation is not shared by all people with ADHD (etc). That ADHD presents differently in everyone, the reason for this is because it is intersectional. And people often have multiple diagnosis. There are so many things that impact the presentation of ones neuro-type. Their culture, their race, their society, their country, their gender and so on… So it will not look the same in everyone. And that is why the social movements around neurodiversity are so important because we want to normalize what this narrative looks like, and not pathologize it beyond the diagnosis criteria and the science behind it. There is a time for medical treatment and there is a time for peer support – both are important but it is really important that one doesn’t cross the line into the other and that is unfortunately what is happening out there in social media land.
I hope by writing this blog I can help inform people on the “fake news” out there – keep safe, guard your mental health from those who wish to take advantage of you when you need help. Peer correlation is great, memes are funny and relatable but they are also not facts and not therapy. It’s amazing to feel validated and seen, but please be aware that there are many people, companies and so on that do not care about your mental health.
With that being said please do support content creators who are doing the good work and are trying to generate awareness from their lived experience lens – we can generate common language and solidarity through them and those platforms. But also ADHD is one of the most well researched ‘psychiatric disorders’ and a lot of the basic facts are out there. If you are experiencing mental unwellness and need help, reach out to a professional, you deserve it.
Jenn has ADHD 