To live with a mental illness can be a very lonely and isolating time in a person’s life, a fact I know very well still battling my way to recovery as I write this. We all know the statistics, in the U.K. 1 in 4 are suffering from a mental illness. Sadly, so many are suffering in silence and far too many are losing their lives to Mental Illnesses, one sad example this year was Claire Greaves who lost her battle with Anorexia.
When I began blogging about my physical disabilities, Mental Health and Autism through AMHA and the charity Fixers last year. I joined a growing online community that had been working hard to dismantle decades of stigma, misunderstandings, myths and negativity surrounding mental health through real stories about their own lives and experiences. As blogging is not my best skill struggling with dyslexia, being a more creative person, I decided to launch a new anti-stigma clothing and accessories brand called Whatlabel in spring 2018, hoping to compliment the work I do raising awareness around Autism, Mental Health and disabilities.
MENTAL ILLNESS. ITS NOT A FAD. ITS NOT A FASHION TREND. ITS NOT A HALLOWEEN THEME.
Why clothing though? When done right, clothing is a great way to promote awareness, after all clothes are used to express ourselves, they can act as a great canvas for artists and designers. Although I had a very clear picture about what i would design, I didn’t go in blind. I took some inspiration from some other mental health clothing companies like WearYourLabel, Fandabby and Schizophrenic.nyc who all have their own values, unique branding and designs based on their own experiences around mental illness. I also took note of independent sellers on platforms like Etsy, which is a great place to find some amazing handmade mental health themed accessories made by some very talented artists and designers.
Although I felt clothing would be a great way of taking what I was doing online into the real world, I was also extremely aware of how mental illness has been abused through fashion and the media, and im not just talking about how Mental Illness has been used as a theme for Horror, or the ridiculous Halloween costumes that pop up every year, (just to name a few examples).
What I didn’t expect was to find dozens of startup businesses with their own websites, aswell as independent sellers using platforms like eBay, Amazon, or sites like Zazzle or Cafepress (which frequently appear in the mental health search results), where it is apparently deemed acceptable to sell cheap mental health themed wholesale clothing and accessories which can be found on marketplaces like AliExpress, as if it’s some kind of fashion trend to jump on. Most of the designs have been created with no thought, using tacky cliché stigmatising designs, printed on see-through cheap material. Many of the slogans are not only offensive, but distasteful and rude.
Would youweara t-shirt with “Medicatedfor your protection”slapped across?
This made me stop and think about what I was creating. I knew it would be essential to ensure I made it clear from day one what WhatLabels missions and values would be. I wanted to make it clear WhatLabel has been created by someone who really does understand. I have only ever wanted to promote awareness, acceptance and share resources to helps those suffering.
Although some home truths will be popping up in my designs, plus my take will be different when designing for Autism and Disabilities. My focus will be on promoting wellness and encouraging messages, especially around recovery, and enduring those dark lonely days when all you can do is just sit and look as a TV screen. I want those struggling out in the real world when they see my designs to feel they are not alone.
To see my clothing, something I spent months designing now roaming around the Barbican Centre on the backs of people this summer was a very surreal moment for me. To have a big organisation wanting to wear my clothing and contribute to raising awareness gave me hope and the energy to keep doing my little bit to highlight the struggles of others.
If you would like to support Whatlabel, you can do so through donation or purchasing of any of our clothing, profit raised this year is being used to support Mental Health Charities like Clearly Speaking, a Special needs family centre in Buckingham who support thousands of families and young people every year who have mental illnesses, autism, various disabilities and special needs.Find out more
The 10th of October was World Mental Health Day and I have a confession: I’m exhausted. Not just this day in particular, it’s been creeping up for a while. The difficulty sleeping, the irrational thoughts, the intense headaches. My head feels so heavy that my only response is to lie down, which subsequently results in me not wanting to get back up. My ability to get up in the morning has diminished, so my 7am start times seem impossible. Even when I manage to get to sleep my dreams are, for want of a better word, unnerving. They serve as a reminder that I still have obstacles to conquer. Heck, I couldn’t even time this post right I’m so all over the place.
I have many things on my to-do list. Paint the walls, defrost the freezer, deal with my Grandmother’s death, wash the dishes, put in my prescription, iron my clothes, battle my demons, paint some more and last but not least, pretend that it’s all okay. It’s not. But that’s okay.
One of my recurring dreams at the moment is that my Grandmother is alive. In most of them she has died and then comes back, sometimes when I wake up I think they’re real. But they’re not. I’ve discovered so far that my grief comes in waves, most days I genuinely feel like she’s going to come back (or that she’s still here). Other days, but rarely in comparison, I sit and think about our various exchanges and get upset knowing they’ll never happen again. I found myself on Google maps the other day looking at where she used to live, digitally walking down the roads I used to when I was little. Then she moved closer to us. Then she moved in with us. Then she lived in a hospital bed in our front room. Then she stopped living. A part of me did too.
It’s strange to have to accept the fact that you will never see someone again. All the questions you wish you’d asked will never be answered. It’s a weird numbing sensation, that can’t say I’ve never encountered before but the circumstances are different. I’ve come to realise that it’s undoubtedly my body’s survival mechanism, something it has become accustomed to over the past 2 years. A way to stop the floodgates from opening and subsequently submerging your mind. Why feel pain when you can feel nothing?
My Grandmother was always my favourite. Any excuse to sing her praises and I’d be off, telling as many anecdotes as I could until the recipient zoned out. She always had sweet stuff in her fridge and her encouragement for us to eat its contents was never ending. She had an infinite list of superstitions with a zest for life that was incomparable to anyone. And now she’s gone. I can’t even put into words how odd it is. It’s like it hasn’t registered that I’ll never hear her voice again or see her cheeky smile. I’m writing words but I don’t feel the emotion they depict. I’m in a familiar fog for an unfamiliar reason.
But I’d be lying if I said I wasn’t already in the fog. It seems easier for me to say that my current mental state is because of my Grandmother’s passing, even though it’s not. It’s just how my brain works. I feel less ashamed about it when I insinuate that there is a specific cause. But in all honesty there isn’t always a reason. Fleeting between a combination of different factors to absolutely no cause whatsoever. I’ve also found that some people just cannot fathom the idea that depression can pop up when it wants to – it’s more comfortable for them to pin point a root cause.
That’s another thing I’ve come across quite a few times. People may be suffering terribly and others may know about it. But nobody reaches out. Because they feel uncomfortable. The void that ensues just festers into bitterness and self hatred. The illness takes up the space where comfort from friends should have been. And before you know it you’re consumed. The well gets deeper and darker. You have no energy to even attempt to start climbing. There is no-one around to throw down a rope and help you. And you convince yourself that no-one is helping because no-one likes you and no-one cares.
It’s all fine and well to promote mental health awareness. Whether that is on the dedicated day itself (the 10th of October) or the week (13th to the 19th of May 2019) or even every now and then. But I must stress that there is a difference between sharing a quote on Instagram and actually reaching out to someone in need. I’ll let you in on a secret: it’s unlikely that someone suffering from a mental illness will reach out when it has already consumed them. I speak from experience but can appreciate that this isn’t the case for everyone (and I applaud whoever has the strength and courage to do so!).
Random acts of kindness are greatly encouraged nowadays. I must admit that, in my opinion, there is nothing more selfless than overcoming ones own uncomfortableness in order to help another. That applies to all situations, not just mental health. It’s indescribably difficult to get yourself out of the depths of despair. Internally crying out for help but the words cannot leave your mouth. You don’t want to reach out for fear of being a burden. So you don’t. But some kind words from someone who cares can just maybe begin the steps to recovery. Sometimes it can be the difference between life and death.
I wanted to talk about something slightly outside of Autism and Mental Health today, although very much related to the subject of Hidden Disabilities. I haven’t shared much on my physical conditions, all of which were diagnosed a few years ago, although much like my Autism, its been something I have struggled with under different labels throughout my life. I want to raise awareness not so much about the said conditions individually in this piece, but the effects of having hidden physical disabilities and some of the challenges I’ve faced personally aswell as how it interacts and contributes with my Autism and Mental Health.
While writing this, I also doubled checked whether Autism and Mental Health are considered officially as hidden disabilities which unsurprisingly they both do (always good to double check). So hidden disability is quite a good subject to cover on AMHA.
Part One | Hidden disabilities | The Crutch Conundrum
So, for a start, what is a hidden disability?
A hidden disability can be a physical, mental or neurological condition that limits a person’s movements, senses, communication or activities that is invisible to the those around them. The very fact the persons disabilities are invisible can lead to misunderstandings, false perceptions, lack of support and frequent judgement from those around.
The public perception of a disabled person is usually defined as a person in a wheelchair, an elderly person or a person visibly in pain, In other words, a disabled person must be visibly disabled either physically or mentally to fit the bill. Thanks to the hard work of many disabled people including athletes at the Olympics in recent years, the definition of a disabled person is changing slowly to show that not all disabilities are visible, and for those that have visible conditions especially, that it doesn’t necessarily stop a person living a fulfilled life.
So, what’s wrong with ya then….
When I was diagnosed with Autism in 2013, it was like a key to unlocking the many medical mysteries that were mounting up since I was a child, having struggled with various physical issues with joints, dislocations in my knees and arms, strange intense pains usually in my legs that were put down to growing pains 90% of the time, (Given I was 6ft since the ages of 14 years old, it started to sound ridiculous by the time I was in my early 20s). The older I became, the more of a struggle it became, up to this point, all my disabilities were very much invisible or mysteries that were always on the back burner. I had put a lot of effort into being as independent as possible, having been a young carer for over 12-15 years, I was used to having others depend on me, not the other way around. With my Autism and Mental Health aside, physically speaking, It wasn’t until the catalyst of removing some major weight when I started college did I start to really notice a deterioration in many of my physical symptoms, almost like the weight was keeping my body together. It was a slow deterioration in the beginning, but once the dislocations began, and I started getting numb fingers and joints, feeling fine one moment and then achy and tired the next, I knew something wasn’t right. The more visible my disabilities became, especially the tiredness and struggle to walk due to the pain, the harder it became to function and accept what was going on, especially all under the label of growing pains!
After being dosed with enough radiation to make me look like I’ve had a trip to Chernobyl, combined with my then new Autism diagnosis which helped piece some other connections together, Hyper-Mobility, Fibromyalgia, Arthritis in my arms (good bye career in art and design) were finally diagnosed. Although more recently the potential for Erlos Danlos Syndrome has been spotted, however finding a Dr able to diagnose it on the NHS has been another thing altogether.
Since being officially diagnosed, I have had an interesting few years health wise, going from invisible to visible disability and then back to invisible disability again, but with the occasional bad day where its more visible thrown in, seeing how people have treated me has been a huge eye opener which I hope to use to raise awareness in the future.
Visible vs Invisible
My coping mechanism throughout my life has been to hide and mask my disabilities, whether it was Autism, Mental Health or physical, I have always tried very hard to keep it private, and not make a fuss, even putting up with people calling me shy, quiet, strange, weird etc… (some of the nicer things I’ve been called without the colourful metaphors). I have tried very hard to pretend everything was ok in my life in fear of being treated differently by others. All my disabilities are internal and not obvious unless Im having a bad day, even before I had labels and official diagnosis, it was just me, and Mental Health with a bit of Dyslexia thrown in for good measure. The real struggles in my life was coping as a young carer, doing my best to look after my family and endure the hardships we went through, without any help and support, while trying to be as independent as possible. Although cracks started to appear in my Mental Health by mid-teens. Behind closed doors, physically speaking I struggled regularly with strange pains in my legs and arms which were always put down to ‘growing pains’, it was like a scratch you itched every now and then but didn’t take seriously as the GPs weren’t concerned, other symptoms like the tiredness or achiness got lost with Mental Health. When the first dislocation happened, because it was so quick and went straight back in, everyone around me thought I was faking the pain, “How could you dislocate Sonny, you would need to go to the hospital!” was usually the reaction I would receive, all my years hiding didn’t help the matter as no one was aware, not even myself to be fair what was happening. When I left school most of the focus was on my then suspected Autism and getting it diagnosed, I was so focused on getting better, and no longer being a young carer, I was determined to sort myself out. Unfortunately by focusing elsewhere I ignored all the initial symptoms of my physical disabilities developing which reared its head not long into my first/second year of Art and Design college.
My plan was to become an artist, or at least something in fine art or graphic design, It was something I had become very good at from years of hard work and practice, just when I was about to start my final year of Art and Design, the strain of overusing my hands started to cause pain in the joints and lose control of whatever medium I was using, I then started experiencing tiredness and lose of feeling in my fingers, I thought It was just my old Nintendo injury playing up again (90s childhood issues lol), but over time I lost my ability to draw properly, or even write for more than a minute without the tiredness setting in, After a lot of thought and stress and worry, I decided to switch over to my backup skills in computing and programming, but it was never my career plan to sit behind a desk, all I had wanted to do was make art and draw. I remember making excuses to my art tutors at the time, I didn’t know how to explain to them what was going on as I didn’t have a clue myself. Thankfully my path via IT and Engineering was a success, as it was a particular interest/obsession which played nicely with my Autistic brain, I picked it up extremely fast, although the symptoms I struggled with during Art and Design college where still there, as I wasn’t straining my hands the way you do holding a pencil etc the symptoms became less noticeable. It was several years later when I was working as a disability teaching assistant did I notice a deteriorated again, as I was trying to finish my Engineering degree and work at the same time (thought it was a good idea at the time). I don’t know if it was a combo of exhaustion and stress or the lack of support for my Autism and Mental Health, but my pain levels started to spike in the day for the first time, spreading to new parts of my body like cold chills, and my ability to walk started to become a real issue, becoming dependent on the car more and more as public transport was causing too much stress and energy, when the slowness in my joints kicked in and the grogginess, I knew something had to change. Then one lovely morning, I caught my foot in a hole one of the students made in the courtyard causing me to fall flat on my face, after a moment of being dazed, I looked up surrounded by several students poking me, although I can laugh at it now, my pride took a bit of a beating that day, it was at that point I knew my pain levels were too great, and my joints weren’t working properly, I would never have normally fallen, I could tell I wasn’t balancing, for the first time I needed medication to relieve my symptoms and support my mental health which was deteriorating from the stress and pressures coping day to day with Autism in an unforgiving environment.
After the fall, and a long story short, it wasn’t long before I quit my job as a TA, and started working in IT, overtime I started using the crutch openly as I could no longer mask or hide my physical disabilities, I didn’t know what to expect at first, most people just think you have a broken leg, or its temporary especially when your young with no obvious history of disabilities. At the time I looked fit and healthy at my original weight, although I was struggling in the background with Autism and Mental Illness as usual, my biggest battle was with the side effects of the medication. At the age of 23 I was given a disabled badge for the first time, certainly not part of my 5 year plan, although I was used to using disabled parking for mum for many years, now having my own, although a relief not having to walk so far, but now discovering how other disabled people can behave when you’re not visibly disabled certainly knocked my confidence. It started with very judgmental stares, old ladies shaking their heads at me with some openly moaning that a young person is taking up a parking space, the cherry on the top for me was having an actual detective (not just a ordinary policeman) wait for me for several hours inside Milton Keynes shop mobility because the lady working their thought I was using someone else’s disabled badge. If I had the crutch or was in a wheelchair, it was obvious, there was no doubt I was disabled, some members of the public can be very kind and helpful, I noticed this especially when I was in London, I would get offered seats to my embarrassment, even if I got questioned why I was in disabled parking, all I needed to do was lift the crutch and people would apologies, but it placed a real strain on my Autism as I dreaded confrontation, I just wanted to go out in peace and be left to my own devices, not have to defend and justify my disabilities 50% of the time.
Before I could adapt to my new situation, my health deteriorated again very quickly from the side effects and interactions of the medication I was on for my Mental Health and pain levels. Most of the weight I had lost when I left school had been put back on again very quickly crippling my joints and back, I became puffy, pale and tired from the medication, which also caused psychosis and amplified other issues with my mental health, I developed a sleep disorder so my routine was virtually gone, I was experiencing agoraphobia and social anxiety, I was also unable to mask my Autism so people started noticing my stimming and sensory overload. When people I knew saw me, I was either starred at, or avoided. As I adapted to using a crutch I quickly discovered how hard it was to access the outside world as everything’s designed for abled bodied people, something I remembered well when Mum was in a wheelchair. The only upside to being obese again was people could tell I was visibly disabled so virtually no one questioned me, but being judged for being fat again was something I didn’t miss from when I was a teenager, I also missed being able to wear nicer clothes that fit properly, or the ability to fit into smaller seats, or have full range of movement in my body. I started to notice people talk through my parents instead of me directly when out and about which made me feel quite isolated and looked down upon. When I decided to stop taking the medication, and try my long haul back to recovery, although I was once again in control of my Autism, and Mental Health, the pain, dislocations, swelling and tiredness were all at war with what was left of me. Looking at myself in the mirror was a shock, and to see how others now treated me made me feel very isolated and angry.
After a lot of time and effort trying to look and feel more like myself, slowly relying less on the crutch, once I dropped most of he weight off and I started dressing and making more of an effort with my appearance, I started to receive the other end of having an invisible disability again, however this time around, my physical disabilities were a lot harder to cope with, especially on the days where I was struggling with pain. Unless said person knows me, or I have openly explained, people don’t realise I’m physically disabled, or if I have a few days where I don’t need a crutch it doesn’t mean im not struggling, or that im not going to need my crutch potentially In a few days. It can be even harder using disabled seats on public transport or disabled parking where I get openly questioned, even having a screaming middle aged man last week block me with his car as I was reversing, despite showing him my disabled badge, I still had him shake his head at me in disbelief, yet ironically I get non disabled people park up next to me almost every time without question just to wait or drop someone off working in the shops opposite. I started to feel very watched and judged all the time, especially on the days I was having a good day, I didn’t want people to think I was faking my disability because I could walk ok one day, and then limp and struggle the next, when you don’t know people, the last thing I want to do is talk about my struggles all day long, having to justify myself. The lack of support from the care system most certainly didn’t help, now that my disabilities are not obvious on the surface, The saying “your young, you will recover“ gets thrown around a lot, because I am afraid of the side affects pain medication and SSRIs have with Autism, usually I get told it’s all in my head, or it’s my Mental Health. The scary thing about it all, is I have no support, and no medication to dampen the anxiety, panic or sensory overload, it’s just me.
As you may have noticed reading my experiences, there is something I call the crutch conundrum, as I rely less on a crutch or wheelchair, yet still needing disabled parking, or priority seats, or the need to use lifts or disabled toilets, because of the judgments and stares from people passing by and other disabled, I started to feel unable to use disabled facilities or parking spaces without my crutch just to show I’m disabled, and not some young person abusing the convenience of easy access, even dad at times feels a little awkward which I found quite difficult as it’s hard enough to deal with my own insecurities. As I’m still recovering, some days I feel scared to be ok, and have a good day, or even recover and look normal In case it meant receiving judgmental comments and stares or feel able to use disabled access in public. As my conditions are life long, it’s not like a broken leg, I’m always going to have what I have, but it’s how I manage it and knowing my limits is the key to how I’m going to cope, it was a scary realization that all the awareness I was doing for Autism and Mental Health, I now needed to be brave and stand up to those who criticize and judge me because of my physical disability which at least 60% of the time is invisible.
End of Part One
Despite all of this, I’m very thankful for the time I had to contemplate my situation during recovery, having the experience as a carer, and as a disabled person has prepared me so it wasn’t a sudden shock becoming disabled. Although I wish I could travel back in time and tell myself not to take the medication that caused a breakdown, Im glad it happened as I know not to in the future, and I can certainly say im stronger as a person coming through the other end, especially experiencing disability in various workplaces when I was on contract. I know my limits now, and when I need to rest, or when I cant do something. I know for one thing, throughout the last 2/3 years, without AMHA or the other projects I have been working on, my recovery would have been so much more difficult, my projects have forced me to put myself out there and write about the hardest areas of my life I have kept private behind closed doors, which I think hasn’t helped my situation, even writing it out like a timeline has helped me to move on and understand better.
Thanks for reading so far, I must admit this has been a challenge to write as im trying to cover three distinct areas, Autism, Mental Health and physical disabilities, which can all blend together.
An entire week is dedicated to raising the awareness of mental health. I can’t help but feel that this highlights not only how many people are affected by mental health issues, but also how much more work is needed to be done in order to break down the stigma surrounding them. Don’t get me wrong, a lot has improved since revelers paid to visit asylums and gawk at people who were suffering from various mental illnesses. But isn’t mocking such conditions in the name of ‘entertainment’ for a few likes or views the same thing? If you take into account the fact that teenagers now have the same anxiety levels as psychiatric patients in the 1950s aren’t we the ones who would have been in the asylum? Are we the ones who would have been laughed at? Are we still?
My mind is uncontrollable. It is constantly abuzz and whizzing at 100mph that if I think about it too much I fear I may get motion sickness. When I’m trying to relax and switch off I get myself worked up because I think about how much I need to switch off but how I can’t switch off because I’m thinking about switching off too much thus never actually enabling me to switch off. It makes me dizzy just writing that sentence let alone actually living the reality of it all. If only someone could invent an off button which I could just switch and have at least a few minutes peace, a break from myself if you will.
Alongside the never ending internal podcast, there are also extraneous variables. One in particular springs to mind. The virtual conversations, the updates, the instant access to other peoples’ lives, the opinions that everyone is entitled to – even though they may cut deep, the desensitization to whose eyes are reading the words that are full of spite, the world at our fingertips – in the form of a touchscreen.
There are both positives and negatives to the technology available to those of us who are fortunate enough to access it. It allows us to stay connected whilst simultaneously detaching us from the sensitivity of humanity. It can have toxic effects – especially when in a bad place. Seeing the picture perfect lives projected on social media can lead to negative comparisons. Belittling and questioning ourselves based on curated content in the form of pixels behind a glass screen. Emoji’s have a billion and one interpretations, and if you’re anything like me you tend to think of the most destructive, even if someone sends an innocent smile I could interpret that as being a subliminal message for their distain towards me. A picture tells a thousand words – so does an emoji. Don’t even get me started on what a message without an emoji or being left on read or how people word themselves via instant messages can be interpreted as. There is no winning. It is all just too much overthinking for my poor brain to process on top of my every day-to-day struggles. The lack of face to face communication (in the form of body language and tone of voice) means that, in my experience, the gap is just filled with paranoia and overthinking which then festers and rots my self-esteem.
The media has a habit of depicting those with mental illnesses as being violent, ‘the black sheep’ (I literally just heard that on TV as I was typing) or the ones that always seem to be on the receiving end of ‘locker room banter’- kind of like in the asylum huh? It stereotypes the complexity of mental health; by fueling such stereotypes, the consequences can be devastating. People may feel scared about talking about their mental health for fear of being typecast as one of the media depictions. Which in turn means they don’t speak up. An individual who feels lonely and trapped in the inescapable prison of their mind. They feel alone even though 1 in 6 of us are in the same boat as them but 1 in 6 aren’t portrayed in the media, at least not as being ‘normal’- whatever that may be.
It didn’t hit me until recently. But we can turn it off. The notifications, the read receipts, the comments, the television shows and even the device itself. Unlike my mind, they have an off button. Maybe we should use it sometime. Instead of looking at filtered images of doctored landscapes maybe should take a few moments to be present and see the world in all its beauty through our own eyes. Focus on the real people behind the real stories. The people behind the screens and the online personas. The everyday Jane and John Does. The 1 in 6.
I have no doubt that this week is going to do a lot of good in the field of mental health. Speaking up and changing perceptions is how the stigma will end. There is a vast amount of online materials available from mental health charities (one of the many positives of technology) all of which can be incredibly educational. However, one of the most powerful things you can do is quite simple really. Talk. Give a hug to a friend who’s in a bad place. If you don’t understand what they are going through – ask them. We can become so immersed in external factors, like our phones, that sometimes going back to basics can help ease our buzzing minds. A break from the information overload. Time to ourselves. Time to heal.
Did you enjoy this amazing piece from our blogger Louise, check out her other pieces on our share platform AMHA | Autism Mental Health Awareness. Read More via AMHA
Access to mental health support is primarily in-person. However, with today’s changing tide with the rise of online solutions, why hasn’t the general population embraced initiatives towards online mental support?
Teens and young adults don’t necessarily see the stigma that the older generation faces with mental illness, but often resist in-person support. As this demographic spends more time on their mobile device, psychologists and psychiatrists have seen an influx of their patients turn to the web.
According to Mike Likier, PhD, ACT, Psychologist, Diplomate, Academy of Cognitive Therapy, “In my interactions with college students, I’ve heard many say ‘I don’t want to be seen walking up those steps to the counseling center’ out of fear of being judged. As far as we’ve come with reducing stigma, we’re not there yet. Online support groups could serve as a bridge to get those folks to the help they need, or at least provide a forum for a deeper level of conversation that may not be available with their current peer group.”
Online support around mental health is currently not the norm. However, a number of therapy support groups have begun to pop up. One non-profit Crisis Text Line, offers free text support. They have reported that 75% of its users are younger than 25, with the majority between 14 and 17 years old.¹ The data speaks, so why hasn’t the mental health community shifted online?
As someone who has lost close friends to mental illness, I have dedicated myself to provide support. My close family friend Louis passed away after struggling for 3 years with schizoaffective disorder / bipolar type 1. The onset of Louis’ psychosis occurred when he was 19, first hospitalized in October 2014. From childhood through high school, Louis was happy, athletic, musically gifted, made friends easily, and achieved outstanding academic success. He was subsequently hospitalized three more times for durations of several weeks to months.
In March of 2017, Louis once again rejected therapy due to medication side effects along with non-acceptance of his condition, making it nearly impossible to manage. Two months later, in the throes of psychosis, he did not understand the danger posed by the nearby river. It is presumed that he perished on June 4, 2017.
Following his passing, I wanted to do more. I teamed up with one of my closest friends, David Markovich who has an expertise in online community building, growing his digital marketing community Online Geniuses to over 10,000 members and running events in over 23 countries. We have now built an online community around mental health called 18percent.org. At any given moment, 18 percent of the United States population, suffers from some mental illness.²
Conversation on 18percent.org
18percent’s goal is for members to learn from valuable resources, make long lasting friendships, and share their story. We aspire to be the largest online community for people struggling with mental illness with a long-term mission to end the stigma of mental illness.
According to Wendy Feinman, School Psychologist, “Social media has become one of the preferred ways that teen-agers communicate with each other. Many students are hesitant to reach out for formal counseling, but may be willing to reach out to online sites to get advice about problems. High school students have voiced that they would like there to be more suicide prevention that can reach their peers who are troubled. A Suicide Prevention group that is coupled with a suicide hotline may be one vehicle to help youth who experience suicidal ideation or other mental health problems. This site would need to be carefully monitored, be able to provide good support for students, and provide appropriate guidance.”
18percent is hosted on Slack, an internal chat service that offers “channels” for community members to hang out and spark conversation. All emails are hidden, protecting anonymity. Moderating is key for this community to offer a safe environment and avoid such issues such as cyber bullying. 18percent has begun to recruit volunteers to moderate the site with the plan to team up with the Suicide Hotline, to provide around the clock moderators.
To our excitement, 18percent has become more than a community focused around mental health. It is a group of people who are building real relationships, sharing their emotional challenges, and to our delight discussing their favorite artists, Netflix shows and weekend plans.
Well. If you would be telling me back 4 years ago while I was in the darkest time of my life and start of my recovery that I was going to be an award-winning mental health blogger. I probably wouldn’t believe you at all and would tell you to clear off in a polite manner.
I was fighting mental illness undiagnosed since I was 14. I got told I had suspected Social Phobia Disorder & Depression when I was 17 but I wasn’t allowed any medication as I was under 18 so they just made me go to camhs and I’m not being ungrateful at all but they just said it was a teenager phrase that I’d grow out off and didn’t offer me any support as it was just “hormones” then I finally got diagnosed properly in 2017 at 20 years old.
About 7 years, thinking I was going crazy inside my brain and people just blamed it on my hormones as I was a teenager and said it was a phrase I needed to get out of. Which made me feel so more alone that I wasn’t being taken seriously as I was just a 14 year old and they just blamed it on the teenage years.
Labels are for Jars, Not People.
This isn’t a hateful rant to the NHS as they are doing an amazing job with low funding but I just wish I had some support when I kept going back with the same symptoms and maybe I would be better?
But who knows?
I was too scared to talk as I knew that it would be blamed on hormones as I was a teenage girl and of course periods.
I wish I kept going back and fighting for a second opinion but at that time I just didn’t have the energy or confidence to get my opinion across and shout that I needed help and support. I used to be so ashamed of being ill. I used to blame and punish myself for feeling low and crying till 2am on school nights as I didn’t want to go to school as I felt so low.
You wouldn’t have been stuck in a house for 365 days at seventeen years old just because of hormones, would you? I know I’m no doctor, but I knew something was wrong. Since finally being diagnosed with depression and social phobia disorder I feel like a rock has been lifted and that I’m finally being listened too and being taken seriously.
I used to be so quiet and shy as I knew I’d get a weird reaction if I told people I was battling depression and social phobia. But now, I’m like if you can’t take my bad days you don’t deserve my awesome days.
I never had a voice then as stigma and my illness took over my voice. Now it’s my time to make sure mental illness and stigma what is attached to mental health knows that I’m the boss and I’ve got my voice back and it’s not going anywhere even when I’m having low days.
It’s not the best news I’ve ever had, and I was upset and angry for 2 days when I got told my diagnosis, but you know what? I’m happy that I’ve got my diagnosis because I knew, that I was right, and everyone was wrong. I knew what I was facing, and I knew what I was battling and I knew my recovery is going to be around the corner one day.
I’ve gained so much confidence since speaking out that I am ill, and I’m not scared of the stigma anymore.I’ve gained so many friends in the mental health blogging community. I’m writing for charities and back when I was 17, I thought I had no hope and I thought that I wasn’t good enough to be writing about a subject what is so close to my heart.
But I am good enough.
I’m speaking up for more people who need their voices back.
In the Aldridge/Brownhills community, I’m finally speaking out in my own hometown about mental health and it feels bloody amazing!
I’ve had relapses in my journey.
I’ve had bad times and good times.
I’ve had tears and smiles.
I’ve had horrible thoughts and happy thoughts.
I’m not a victim of mental illness. I battle it, yeah, but it isn’t me.
I define me. No illnesses will define me.
I’ve had times where I hated my body and myself but times where I love my body and myself.
Last week was so intensive and bad, I thought I was going insane in my head and I didn’t want to fight anymore. But this week is a new week and I am determined to make It a good week. But you know what? That’s completely fine. As It’s okay not to be okay!
Stigma use to get me down so much and use to make me feel ashamed. But when someone does say something nasty to me about my illness, I don’t listen to them as they probably aren’t educated enough and that’s upsetting really as they could be going through with it, and they wouldn’t even know. I tend to educate them and they thank me later!
I’m a stigma fighter and proud.
I’m a mental health advocate and I’m so bloody proud to be one.
I’m Shannon and I bloody define me!
Labels are for jars. Not for people.
Talking does save lives. I’m the living proof that it does even on my bad days.
Big thank you to Samaritans for last week being my shoulder to cry on when times were so exhausting at 4am when everyone was asleep.
Big thank you to my family for looking after me when I was so low and I didn’t want to talk about what I was feeling but you managed to talk to me and you helped.
Big thank you to my Nan for noticing the symptoms that I was getting worse and booking me that most important doctor appointment last Friday what saved my life.
Big shout out to my amazing doctor! Dr Flenley as he finally listened to me and I probably wouldn’t have been here today without his kind words and actually helped me. He’s a credit to Aldridge and Portland Medical Practice.