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| 96% of people surveyed don't believe that physical & mental health are teated equally |
In October 2015 I was diagnosed as being on the Autistic Spectrum. I'm nearly 50 and my diagnosis amongst other things was an opportunity to reflect over many events in my life and see them from a different perspective.
When I explained my diagnosis to
people, the reactions I got were varied and it made me wonder not for the first
time that if I had told them I'd been diagnosed with a physical condition,
whether they would have reacted in the same way.
However some people were very kind and
people online were very supportive. Some people called me brave, which they
meant kindly but as I have an over-thinking brain, I wondered if my choice carried with it an element of risk.
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| 42% of people have received a negative response when sharing their diagnosis with others |
There is definitely still a high level
of stigma that walks hand in hand with anything to do with mental health and
"invisible" conditions like autism, depression, anxiety and bi-polar
disorder.
In the case of MS which is a physical
condition, there isn't always a tangible sign of its presence, so symptoms can
be misconstrued. I know when my mum was first diagnosed with dementia, she
feared the stigma that revealing her condition might bring.
Culturally we need to see a sea change
in attitudes so that for mum and me, my daughters and millions of others like
us, we shouldn't be afraid of being who we are.
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| 88% of people believe that everybody shares responsibility for ensuring equal treatment of people with an "invisible" condition. |
I decided that I needed to address this
issue. Irrespective of anyone who believes that labels are
unhelpful and reductive, to me diagnosis gave me the answer to the question
I've asked myself all my life, "why am I different?"
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| 38% of people have experienced social exclusion as a result of revealing their own mental health/invisible condition or that of the person they support |
The "Out of Sight, Out of
Mind" campaign seeks to highlight the lack of parity of public attitudes
between physical and mental health by highlighting that invisible or hidden
conditions, need to be treated in exactly the same way as any other health
condition.
To illustrate this I conducted a survey
which was completed by 519 people. The results are detailed below with some
case studies. The fact that two of the case study participants needed to remain
anonymous is further evidence of how far we as a society need to go in
understanding that difference is normal.
Case Study #1. Gavin
Wheeler is a mechanical engineer. His five year old daughter Seren has high
functioning autism.
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| 85% of people either has or knows someone with a mental health condition |
Some of my friends don't understand why I
don't go out much anymore. Seren doesn't like being left with a babysitter and
gets very distressed, so we just don't do it.
We also get a few funny looks when we go out for dinner. Neither of our children are great at waiting for dinner, so we always have colouring books or toy trains to keep them entertained. We tend to go to places with a quick turnaround, and get the bill as soon as the food arrives, which people don't seem to understand, but I think eating out in general would be better if restaurants catered for children better and kept waiting to a minimum. At the local wildlife park they have a buffet type service, where you pay before you eat, and it's their favourite place to eat.
We also get a few funny looks when we go out for dinner. Neither of our children are great at waiting for dinner, so we always have colouring books or toy trains to keep them entertained. We tend to go to places with a quick turnaround, and get the bill as soon as the food arrives, which people don't seem to understand, but I think eating out in general would be better if restaurants catered for children better and kept waiting to a minimum. At the local wildlife park they have a buffet type service, where you pay before you eat, and it's their favourite place to eat.
Case study #2. Bruce
Lawson is an open standards advocate for a web browser company. He lives in
Birmingham. He has multiple sclerosis.
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| 88% of people believe all of us are responsible for the equal treatment of people with a mental health condition |
"Multiple sclerosis is a neurological disease in
which the insulating covers of nerve cells in the brain and spinal cord are
damaged. Some people are much worse off than I am, and have visible symptoms
(wheelchairs, are bed-ridden etc). Mine is — touch wood — relatively mild. When
tired, stressed, or fighting a cold (for example), I can be clumsy, because my
fine motor control goes stupid. I can also slur my words or trip over air
molecules, which can lead people to think I'm drunk. This is made worse by the
fact that about 30% of people with MS experience difficulty swallowing, which
for me means that food sometimes comes back up, requiring a hasty exit to the
bathroom.
My job, however, involves lots of international
travel, public speaking and networking meals. Because of stressful and tiring
nature of the work, and the symptoms I get, I found it easier to be be open
about my disability, so that if any clumsiness, speech problems or bathroom
rushes occur, people will know why.
Sometimes people ask questions about it, which I'm happy to answer. No-one treats me with kid gloves - which I'd hate. Perhaps the green mohawk and kickboxing gives a tougher impression than I merit (I'm a big softie folk music fan).
Sometimes people ask questions about it, which I'm happy to answer. No-one treats me with kid gloves - which I'd hate. Perhaps the green mohawk and kickboxing gives a tougher impression than I merit (I'm a big softie folk music fan).
I'm very lucky that in the 16 years since being
diagnosed, my different bosses in various organisations have been understanding, ensuring that I get the rest I need.
A bonus to being open on social media is that I occasionally get messages from people who've been recently diagnosed (always a tumultuous and emotional time) who tell me that reading my statuses from various countries gives them encouragement: MS doesn't inevitably lead to wheelchairs, paralysis and incontinence.
A bonus to being open on social media is that I occasionally get messages from people who've been recently diagnosed (always a tumultuous and emotional time) who tell me that reading my statuses from various countries gives them encouragement: MS doesn't inevitably lead to wheelchairs, paralysis and incontinence.
And, nowadays, when I'm actually drunk, people
don't give me a hard time, as they think it's the MS. Result!"
Case Study #3. Anonymous
contributor who has depression and ADD.
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| 56% of people have experienced a negative reaction when their invisible condition is revealed |
"I think one of the
worst aspects of having an invisible condition is that people who don’t know,
will say awful things or make jokes about people with mental illnesses while
I’m standing right there. I feel alienated and pressured to speak up. It’s not
a good way to start a conversation about it. It usually ends up being
productive conversation but I’d prefer not to have to tell people about myself
in that way.
Another issue is that people forget that I have depression. I’m often told I ‘seem fine’ so they forget. When I have a new bout of it, I have to remind some people, which often ends up being emotionally exhausting for everyone.
Another issue is that people forget that I have depression. I’m often told I ‘seem fine’ so they forget. When I have a new bout of it, I have to remind some people, which often ends up being emotionally exhausting for everyone.
Other people,
while well-meaning, think they can help by pointing out all the things I should
be grateful for or reminding me of all the people who love me. There are others
that tell me all about the treatments and cures available. It’s hurtful
when that happens because I’m aware of these things. What they’re unaware of is
that treatments aren’t as magical as they’d like to think and ‘cure’ is a
relative term. Being reminded of my situation makes me feel much worse. It’d be
more helpful if they’d ask me what I need instead of assuming."
Case study #4. Anonymous
contributor who has depression and anxiety.
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| 44% of people living with an invisible condition have chosen not to share their diagnosis |
"When I’m asked
(often in job interviews) why I’m a contractor I recite the same line, with
utter conviction to the point where even I start to believe it, each time: “I
once read about someone only a few years older than me who was a comms director
while I was still junior. He gained his experience through contracting so
that’s what I decided to do.”
But the truth is
that my anxiety and depression prevent me from getting a permanent role.
Actually, that’s wrong – my fear of talking about it and my experience of other
people’s reactions to it prevent me from applying for permanent roles. I’m the
sort of person who has needed a week off sobbing by day, having nightmares by
night. If I’m on a day rate there’s a lot more flexibility about time off and
if relationships get too difficult with a particular team member.
I once worked with
a woman who declared to the office that “Tourette’s, ME and bi-polar disorder
don’t exist, they’re just an excuse for bad behaviour” I simply had to
leave and couldn’t possibly tell her that I suffer from depression because in
her eyes it’s probably just an excuse for laziness. I can simply leave with no
questions being asked and no eyebrows raised when my next employer sees that I
was only in that role for eight months.
I admire people who do talk about their
hidden conditions – they are paving the way, ensuring that future generations
have a smoother path with fewer obstacles to trip them up. I’d love to be one
of those people but I’m not. I can’t afford to be."
Case
Study #5. Anonymous contributor who has autism and anxiety.
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| 96% of people feel that society doesn't treat mental and physical health equally |
"My anxiety can affect my everyday life;
sometimes I’ll wake up in the morning, unable to get out of bed, frozen in
place because facing the day ahead is just too much of a challenge for me to
cope with. When I was at my worst, I had to come out of school for almost two
years due to how quick I would be to panic, or burst into tears at just the very
idea of leaving the house in general.
I am better now. But I have my off days. And
if one of these days happens to occur when I have to go to college, would I let
my teacher’s know I’m absent because of that? To be honest, no, I wouldn’t.
I
have such a fear of being judged that I usually come up with some other excuse;
a sudden migraine, or bad stomach problems normally. Even if I think they’d understand on the surface, a part of
me is worried, due to the stigma I’ve faced in earlier life, that they’d hear “too
anxious to come in” as “wants to skive off of doing work”.
On the plus side though, I’m taking
medication for my anxiety now; the side effects cause stomach problems, making
me miss more college either way.
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I'm very grateful to the case study participants for sharing their experiences with me.
Many thanks to everyone who shared my survey online
and I'm hugely grateful to the 519 people who took the time to complete the survey.
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| 43% of people if diagnosed with a mental health or invisible condition, would fear for their job security |
"Out of sight, out of mind" Campaign - Difference is normal
