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mental health awareness week seems like a great thing but there is a darkness in it.

Here we are another Mental Health Awareness week down and this year after years of keeping silent as I saw my life long chronic illness reduced to a hashtag I felt compelled to speak this year. Sit down and get yourself a brew this is a long one as there is so much to unpack here. I will do my best to compartmentalise the points. I do not want to blind you with facts and figures as this is a personal account but throughout the post I have added external links for you to read.

:disclaimer this post talks about psychosis and suicide and some of you may find this triggering

Firstly for new readers I want to share with you my background of mental illness. I have struggled since I was in my teens with mental illness, I am now in my 40s. Over the years I have had my diagnosis flip from schizophrenic effective disorder to bipolar effective disorder with psychosis. My mental illness means I hear and see and sometimes smell things that other people cannot, I have anxiety, insomnia and mood swings and attempted suicide more than once. I am now at stage in my life where I feel the name of my diagnosis only matters to the NHS and the DWP I live with the same symptoms regardless of the label.

I have also had periods of depression that may or may not be linked with my schizophrenia or the fact that I have a chronic illness/disability. Certainly sometimes the depression has been causal such as a reaction to still birth or miscarriage. Needless to say mental illness is a complex issue and there is not a lot of education out there, yes even now.

Poor Mental Health Is NOT Okay

This is a big one. Let me begin by saying we all have mental health that fluctuates our entire life. Imagine a flat line, that is your baseline. Now picture a wavy line over the top of it, that is your mental health. Sometimes highs, sometimes lows sometimes it will be in tune with your baseline. We all have it. Having poor mental health is not okay, it is never okay. I see what the hashtag was trying to do but what it has actually done is normalise it and it is not normal. Why should we not normalise it? Through normalising poor mental health we are advocating the huge drop in funding and care for people in need. Hey it is okay not to be okay is a very dangerous message, it is not okay for people to self harm, commit suicide, slip through the net or be off rolled due to budget restraints. Please see the following links for reference; LINK ONE, LINK TWO, LINK THREE, LINK FOUR.

Let me be clear I fully believe that the “it’s okay to not be okay” line is far more insidious than we give it credit. Surely “it’s okay to ask for and receive help” is what the message should be. For those of you that think well it is almost the same thing you clearly do not understand the nuances in language and the damage they can cause.

It is not time for a conversation about mental health it is time for action.

I cannot tell you how board I am of hearing people say how great it is that we are starting to have this conversation about mental health. The Time For Change campaign started in 2007, that is 13 years ago! Guess what the charity Mind started in 1946, Rethink Mental Illness started in 1972, The Samaritans was founded in 1953. This is NOT a new conversation the only thing that is new is we all have social media now. Well if my social media feed had any influence on social policy we would all be living in a socialist utopia right now and watching endless videos of cats reacting to technology as our jobs – we’re not. The truth is things are obviously better than the days of shipping people off to Bedlam but the quality of life is not so great for people with long term mental illness.

I was a university educated woman with over a decade of experience in project management in the third sector when the credit crunch hit. After being made redundant as so many were I was sending upwards of 8 applications off every week for 2 months. EVERY time that I filled out the anonymous disability form on an application I was not called for interview. In fact after a month I sent off two applications to one organisation one in my own name and one with a false name. I got the interview and my counterpart with a false name, where the disability declaration form was filled in, did not get called. For those of you who are unaware the UK implemented a Guaranteed Interview Scheme for disabled people. The idea was that IF a person met all of the job specification criteria and they were disabled they would get an interview, the scheme is there to level the playing field in the job market, yet only 1 in 4 people with a long term mental illness is employed.

a person forced into sleeping rough due to mental illness

Mental illness brings poverty & social problems.

I am in a very privileged position right now. My partner is my rock he can deal with all of those things that I need that I cannot and supports me. It wasn’t always like that, I wasn’t always in this position. I have been single and unsupported and mentally ill and things have not changed I just have my rock now so those who where I was years ago are still suffering. I have been sat in the town hall trying to explain that I have to burn post when it arrives to remove the threat of any surveillance occurring from a different dimension. Okay that might sound ludicrous to you, it might even make you laugh to read that. That is okay if you did, you can be honest about your initial reaction. Now imagine how scared a person is when their delusion is real. Imagine your fears coming to life right now. Then try having a conversation with someone who probably has to hear every excuse under the sun as to why council tax payments are late. They are not trained in how to deal with a delusional woman. There are lots of ways that a mental illness can directly cause social problems and poverty and I am not just talking about employment.

When I am in a deep state of a psychotic episode I may be too afraid to leave the house and buy food. I have jumped in a taxi and paid them hundreds of pounds to take me somewhere that voices told me to be. I took out three mobile phone contracts on the same day because I was scared that I was being monitored. I have burned my clothes and bedding more than once because I thought they were infested. All of those things had quite an impact. To read more than my anecdotal experiences on mental illness and social problems follow the links. Housing & mental health. Poverty & quality of life. Poverty. Debt. Social Problems.

woman holding her hands on her head

There are lots of misconceptions around mental illness & some of those are perpetuated by the mental health awareness.

Images like the one above are littered all over the internet, including websites that are there for the benefit of those with a mental health issue. This image is damaging. It makes people who are in crisis think they are not in crisis because they haven’t reached the point of despair because this is the image we have rammed down our throats constantly. All of those incidents I mentioned above I was holding down a job for most of them. I was getting up and washing and getting dressed 99.9% of the time. I might have gone to work and passed for normal all day, gone home and cleaned blood from my walls as I was convinced that there was blood dripping down them. At no point have I ever resembled that image. If you think that image is not damaging to people look at how many people with a mental illness had an un successful PIP claim, maybe they made eye contact and looked like they had washed themselves! (access to benefits & mental illness)

The major types of mental illness include:
• Depression
• Anxiety
• Mood disorders, including bipolar
• Personality disorders
• Schizophrenia
• Trauma disorders
• Eating disorders
• Addictive behaviors

When you look up the list of indicators for depression, anxiety, mood disorders, personality disorders, trauma disorders, schizoprenia and addictive behaviour they all put personal hygene and eye contact up there as a main indicator. I had a friend who was a GP and he was ranting about a patient, without going into detail I suggested that perhaps that person was in crisis and seeing you as a pillar of society is offloading on you with what are, yes non medical issues they were indeed social problems but you could have sign posted them. This GP friend then said no he was making eye contact, he was clean, he was fine. That patient committed sucide that night. As a former social worker this is not the only time I have seen signals misread.

Why is this related to Mental Health Awareness Week? It is connected because for a whole week we are force fed misconceptions that put lives at risk, the very people the week is supposed to be helping.

meatal health awesness should not be a  reason to sell candles

Mental Health Awareness Week has become a marketing tool

We have all jumped on a bandwagon, looking for the right time to share a message, launch a product or event. That is the natural order of business. Let’s face it not all marketing is evil, not all of it. When I worked for charities such as Oxfam or City Centre Projects, Shelter we would look for wider messages, global or national days or weeks that would give our campaign or message more press. We were pushing charitable activity, I think I get a get out of jail free card for that. In preparation for mental health awareness week I have received over 250 emails from pr companies or pr departments. Included in those product lines were candles, skincare, bedlinen, headphones, spa breaks, yoga equipment, homeware, soft furnishings, stationery, electrical goods, blenders ad fin -ucking itum! I cannot speak for everyone out there who suffers from a long term mental illness but often when I have my head in the kitchen cupboard and I slam the door repeatedly into my head to try and make the voices stop I could not think of anything more restorative than a new cushion and a candle!

If you are still with me I thank you there is so much to unpack here but this is important learning. This leads me to my next point.

Mental Health Awareness Week is a sanitised conversation.

What do I mean by this? Think back to the history of the Christopher Street Day riots and subsequent pride parades that arose. Now think about pride parades today. Some cities have co-opted these events so much that you can barely see the visibility of the LGBQT community, we exist but we don’t have the buying power of Sainsbury’s for instance so can we please march behind the floats that paid the council a wedge of cash.

The way mental health is discussused during ‘our week’, I mean really a whole sanitised week a year thanks, thank you so much guys. Well the way it is discussed is the same way straight people talk about LGBQT rights.

The term mental health is a little too all encompassing & awareness week is triggering for some.

So I mentioned on my Instagram feed that I was writing this post and hinted at the tone of the piece. I invited people to comment or message me, for privacy sakes their thoughts and feelings on the subject. Within 4 hours I received 23 messages. Considering I only have just over 1,000 followers on Instagram that is a pretty big number. I want to condense the themes of those messages in this section.

Mental Health covers a huge range of conditions and illnesses and the messages I had that said they felt like it was okay to talk about PND, depression and anxiety they did not feel comfortable to share their stories. Their stories felt darker and scary and not fitting with the narrative they were seeing. I have been writing this post on and off now for well over a month and it has kicked my arse. It is hard to talk so openly about things like this. I have worked hard to do that and most of that has come from the support I get from my partner. So I understood when people felt that this week made them retreat further into themselves, to hide, to remain secret because of the narrative of mental health awareness week.

The messages I had from around half a dozen people said that mental health awareness week made them feel like failures. When I chatted further on this it made sense. We have an entire week of people bombarding us with messages of how running or yoga or painting or a mindfulness app ‘fixed’ them. Well I suppose we all have a different cross to bear when it comes to mental illness and I was remined of a time when I ask my employer, positive about disability two ticks, if I could attend a peer support group once a month on a Friday afternoon. The response I got was; “Johnny Depp makes enough movies and I read that he has a mental illness so are you telling us that you can no longer deal with the pressure of the role”. So yes I get their point about being made to feel like a failure.

The truth is we are not all equal in this. Let me give you an analogy. I broke my foot. It was painful and debilitating but it did not give me an understanding of being an amputee. Remember that wavy mental health line I mentioned at the beginning of the post. Well some people will find a light at the end of the tunnel and others will not as they have a chronic condition and all they can ever hope for is managing that. I am that person, countless more are in that position.

The last point that came through on messages was that some find the week triggering. Yes we should not suffer in silence but news saturation point is hard to take. I get that. Look at the current times we are in, people die all the time, in 2017 26,408 people died from flu in the UK but the news does not report it because it is something that happens all the time. Those deaths are just as tragic as covid deaths. So when you have a week of mental health saturation people can be triggered. Maybe a better way to discuss these things would be to pull back the curtain all year.

Thank you so much for reading my thoughts and taking the time to gain an understanding of a different perspective.

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3 Comments

  1. Reply

    Anon

    July 18, 2020

    Have you considered that you may have traits of narcissism and borderline PD? Not a judgement genuinely curious.

    • Reply

      Nicolette Lafonseca

      July 18, 2020

      what a wonderfully inciteful and perfectly lovely comment and how brave of you to send it from Anon. Do you suffer from agoraphobia? Sounds like you are not getting out much leaving all that extra time for trolling. Not a judgement, genuinely curious

  2. Reply

    Helen Nychka

    August 10, 2020

    I burst out laughing at your response to July 18, Anon.
    Thank you Nicolette- this post is so beautifully written and gave me hope for our situation. This is what I am grateful for today — bumbling into this link through Instagram (Banyan Bridges), when I should be writing up a report on an evaluation I did 3 weeks ago. I grew up in a family where bi-polar with psychosis was misdiagnosed as schizophrenia in my mother, brother, and sister, with unfortunate results for the fam. Now my own young-adult child has been diagnosed with the genetic legacy that I passed on and that brings me full circle from running away from the family I grew up in. My heart lies in my relationships as daughter, sister, and now mother of those who suffer (and it IS suffering) from mental illness. Your blog, and your Instagram have been present only 20 minutes in my life, but you’ve brought me joy AND some excellent talking points on the subject of Mental Health. And these “awareness weeks” that permeate just about every human experience drive me wild. I happen to be a professional who specializes in autism and I feel much the same about “autism awareness week.” I am inspired to promote “live a slow creative life.” Thank you for the glimpse into yours. I look forward to following.

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