The Right to Fight Stigma

So a few weeks ago I came across an online article that talked about ways to reduce mental illness stigma. Since I’m doing a PhD in the subject I’m fairly interested in what is being suggested and advertised within the community, so I sat down and had a read.

It was a well written and informative article, unfortunately I closed the window and haven’t been able to find it again – or I would have linked it to this post. Anyway, I was pretty pleased that this issue was being publicised. But then, just towards the end it started talking about how the community should be listening to ALL people with a mental illness, not just the “high functioning few” with potentially less severe diagnoses. That although its great that highly successful celebrities and athletes “come out” and talk about their struggles with mental health, there are many people within the community who are unwell and unable to function to this level. That the community should be aware of the severity of mental illness, and that being  diagnosed with a mental illness and able to function at a high level iis not necessarily the norm. They likened it to someone with Stage 1 cancer advocating for awareness instead of those with Stage 4 cancer (which I didn’t quite understand, because whatever the stage, it’s still cancer!). Although it was never specifically vocalised, it kind of felt like the author was saying “if you are high functioning you don’t have a REAL mental illness, and you are stealing all the attention away from people who need it”

I get what was trying to be said. And I do agree that high functioning is not necessarily the norm, and that all facets of mental illness need to be respected and recognised. I also get what the author was trying to say about celebrities and such sharing their personal stories. That there is a risk of people thinking “well, SHE has bipolar disorder and seems to be doing ok. So why can’t YOU? Mind over matter. Get your act together.” I get it.

But it kind of bothered me as well. You see, doctors have told many times that I am high functioning. So I suddenly felt uncertain. Do I have ANY right to be blogging about this? To be researching this? To be fighting for this? Is this what people think of me? Am I  undermining the severity of bipolar disorder? I felt unsure, and this is partly why I haven’t blogged recently. After reading this, everything I wrote felt like it was coming out wrong.

Then I thought; “Rachael, you have been diagnosed with a mental illness. Your experience is just as valid as anyone else’s. You wish to devote your life to reducing mental illness stigma, spend an extra four years in school then enter a poorly paid line of work so you can help other people. What exactly have you done wrong?”

So today, I would like to respectfully disagree with the above argument; for four main reasons.

1) When I have been extremely unwell, when I am “low functioning”, so to speak, fighting to reduce stigma is not my priority. Getting through another day is my priority. Getting myself out of hospital is my priority. I’m not equipped to mobilise, there is no way I could have undertaken a PhD. I couldn’t even concentrate long enough to watch ten minutes of daytime TV. I gave up reading. I could barely follow conversation. Hell, after ECT I practically forgot who I even was. When I am in the midst of an episode I am in pure survival mode and quite frankly I don’t give a shit about stigma reduction.

Now that I am in a better place I feel it is my responsibility to fight for what is needed, and for the people who – like I used to be – are not able to advocate, to raise awareness and to share their stories. The people who are struggling every day. The people whose illness has taken away their voice, whether temporarily or permanently.

When I was heavily pregnant I couldn’t lift heavy objects, so people assisted me. After my son was born I was able to lift once more. This is the same, I want to give a hand to the people who can’t lift for themselves at this point in time, and even those who may never want or be able to. And I don’t see anything wrong with that.

2) Isn’t any action to fight this fight good? One of the major problems with stigma reduction is that people are fearful of mental illness. It is misunderstood and there is a strong belief that mental illness leads to violence. People who commit obsence acts of violence are often proclaimed to be mentally ill. The media continually exacerbates this fear with blockbuster films like “Fatal Attraction” and “The Shining”, which , although fantastic films in their own right,  perpetuate this belief that us mentally ill folk are dangerous.

I believe that one of the most helpful things we can do to try and reduce stigma is to talk about it. To share our stories. To make this a less taboo subject. Mental illness is incredibly common, and the more people talk about it, the less of “freakish” it becomes. The more we can show that all sort of people can be diagnosed with mental illness – not just mass murderers and terrorists – the more we can fight stereotype of mental illness and violence. Whether it is the average joe on the street or a Hollywood A lister sharing their experience – isn’t this what is required? And since celebrities generally have a wealth of social power…wouldn’t this be a positive thing?

2) Is the severity of my disorder dependant on my level of functioning? And if so, how do I establish how “severe” my mental illness is? I’m the girl with the proverbial curl in the middle of my forehead. “When I am good, it is very very good, and when it is bad it is horrid”.

I’m considerably lucky. And I realise that. I can go for months or years without a sniff of a problem. I can educate myself to a high level. Work. Maintain my marriage and relationships. Parent. Stay out of hospital.

But – when I DO have an episode it is catastrophic. I don’t just go to bed for a few weeks. I end up in hospital for months. I’m psychotic. I’m forcibly injected. Involuntarily detained. I’m not even allowed to wear my own clothes. I’m told I am treatment resistant, a “difficult case”, and one of the worst that the doctors have ever had to treat.

If you met me without knowing my past, and I told you my diagnosis, you would probably assume I had a very mild version of bipolar disorder, or perhaps that I had been misdiagnosed. If you read my medical history you may think otherwise. I’m still not sure of the severity of my illness, and I don’t care to speculate – it is what it is. But, my point is,  unless you know all the facts, how can you judge the extent of someones illness? And really, whatever the supposed “severity”, mental illness is mental illness. Those with Stage 1 cancer also need to endure months of treatment, sickness, fear, and stress. Their experience is still valid, as is the experience of those with so called “less severe” mental illness.

3) Being high functioning isn’t always easy. People don’t always believe us when we say we are unwell. I have been denied treatment many times by numerous doctors, hospitals and nurses because I appeared to be functioning well despite my illness. By the time I was (grudgingly) offered help it was an emergency situation. Think about it; how many so called high functioning celebrities or public figures or people who seemingly “have it all” end up attempting or committing suicide.  This is the kind of mistake that costs lives

At the end of the day, my view is that stigma reduction is a major issue, and that anyone who feels able to fight should fight. I feel like the article, in a sense, was discriminating between experiences of mental illness, which is basically what we are trying to avoid in the first place. Diagnoses, status, functioning aside, we all have been touched by darkness. We all want the same thing; equality. So I will continue to research, to blog, and to share my story.

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7 thoughts on “The Right to Fight Stigma

  1. It doesn’t have to be activities purely intended to fight stigma though. All of our blogs do a tiny bit in that battle, I think. And lots of people writing and talking about it all will very likely change at least one mind out of their readers/listeners. I think there’s a ton of “passive stigma fighting” going on, simply by being out. Works that way for queers like me too. But you make excellent points and I’m just adding my 2c, not disagreeing with anything.

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    • Totally agree! I actually think things like blogging and talking about mental illness are more important than formal research in a way. Because it is dealing with the situation on a personal level, and as you say is very likely to help change maybe even one persons perception of mental illness. Because this is almost a more “natural” approach the effects may be more long lasting. Thanks for your comment 🙂

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  2. I really have an issue with the “high functioning” label.

    Most of the time, due to regular therapy and proper medication, my wife technically would be high functioning. That does not lessen the severity of her mental health issues or the fact that if she does have a depressive or manic episode it can be extremely bad.

    I think anything we can do to reduce the stigma of mental health problems is beneficial. Whether someone is “high functioning” or not should not cheapen the message.

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  3. I read this a while ago and meant to comment back then! 😉 Got distracted, lo and behold…but wanted you to know this post really resonated with me. As always, it was an awesome read and brilliantly written! Hope this finds you well! 🙂

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