Celebrity Rating Of Stigma

What makes me any different from Stephen Fry?  Or any other celebrity who speaks out about living with mental illness?  So I’m not a celebrity, but after that, we’re all the same.

There has been a lot in various forms of media this week about Stephen Fry coming out about his suicide attempt in 2012. Describing himself as a victim of his moods, he said that he views his role as head of the charity, Mind “is not to be shy and forthcoming about the morbidity and genuine nature of the likelihood of death amongst people certain mood disorders“.

I think it is great when anyone is ‘not shy and forthcoming’ about mental illness and suicide, but a celebrity adds the advantage of perhaps a wider audience than the rest of us. It got me thinking though…

Do we think it’s easier for Stephen Fry, or any other celebrity, to talk openly about their mental illness?  I ask, because sometimes I think that we rely too much on celebrities for this, saying “it’s easier for them”.  Somehow their money, and their status means they apparently have less to lose in being open.  I’m not so sure.

Stephen Fry has friends who might judge him, just like me.  He has family who might criticise him, just like me.  He even has a job he could jeopardize.  I don’t have that right now, but I have in the past.  He also has an audience through his employment.  They could judge him too.

It’s interesting because earlier this week I read an article that suggested that celebrities exposing their mental illnesses actually make the stigma  of mental illness worse.  Apparently celebrities give a warped impression of what mental illness is really like.  They don’t have the same fears as the rest of us about the repercussions of coming out.  Oh, and they’re “less seriously ill” than the rest of us.

It seems to me that celebrities can’t win either way.  If they speak out about their mental illness, they’re somehow judged as not having a clue what ‘real life with mental illness’ is like.  Somehow we think they have it easy.  We can think they have less to lose by coming out.  On the other hand, we rely on them to speak out, even when we’re too afraid to do it ourselves.

I don’t think celebrities have it easy with mental illness.  Anyone with a mental illness will go through hell, regardless of their social status.  Maybe Stephen Fry’s own version of  ’hell’ is different from mine, but if I choose to judge his ‘hell’ as not being ‘good enough’ then I am no better than the people who judge me… or you.

Personally I believe that the more celebrities who come out about living with mental illness, the better.  But only in that they reach a much greater audience than perhaps you or I might reach.  What is really needed is for people from all walks of life to be speaking out about mental illness.  After all mental illness doesn’t discriminate in who it affects.  It affects  all types of people.

I think the lesson we need to take from Stephen Fry’s decision to share with the media is that we should share too.  No, I’m not saying you or I ring up the local newspaper or television station but simply sharing with one other person, maybe a friend or family member, contributes to destroying the stigma that all of us bear.  It doesn’t have to be a big thing.  Simply telling one person we trust makes a difference.

“But just as we can all agree on what is red, even if we will never know if we each see it in the same way, so we can all agree – can’t we? – that no matter how confident we may appear to others, inside we are all sobbing, scared and uncertain for much of the time. Or perhaps it’s just me.

Oh God, perhaps it really is just me.

Actually it doesn’t really matter, when you come to think of it. If it is just me, then you are reading the story of some weird freak. You are free to treat this book like science fiction, fantasy or exotic travel literature. Are there really men like Stephen Fry on this planet? Goodness, how alien some people are. And if I am not alone, then neither are you, and hand in hand we can marvel together at the strangeness of the human condition.” 

― Stephen Fry, The Fry Chronicles

Related articles

• Stephen Fry: recent attempted suicide a ‘close-run thing’ (guardian.co.uk)
• Stephen Fry reveals attempted suicide (comedy.co.uk)

• Do celebrity disclosures promote mental illness stigma? (theglobeandmail.com)

• Coming Out (infinitesadnessorhope.wordpress.com)

Coming Out

If your first thought is that this post is going to be about either my sexuality, or someone elses, you’d be forgiven. Coming out used to be about being presented to society, and more recently it’s been about coming out of the closet. Usually the gay closet. I’m not about to do either of these but coming out is something that I’ve been thinking about in terms of mental illness.

Lately I’ve been reading a number of blogs and articles about the stigma of mental illness, and more specifically the stigma of Borderline Personality Disorder (BPD). And each time I’ve finished feeling a little frustrated, like we haven’t quite hit the nail on the head yet in addressing this problem.

That’s why I started thinking about the way in which sexuality, and more specifically, different kinds of sexuality have been moving toward a more acceptable space in society. I know that there is a long way to go yet for the LGBT movement, to enable all people to feel able to be who they are without being stigmatized. I look forward to the day when we all accept people for who they are.

Image credit: Hugh Young

It’s got me thinking. Head back nearly 30 years ago, in New Zealand there was massive reform going on to see homosexuality legalised in 1986. It was a huge reform which saw many protests and arguments. Actually it was much along the lines of the Marriage Equality legislation that is currently being debated in many countries (including New Zealand).

As a young, (I was 21) heterosexual I could have chosen to ignore the 1980′s reform. At the time I was very involved in a Christian church (as I had been all my life) where homosexuality was frowned upon.  Actually ‘frowned’ is not that word.  It was regarded as wrong, and as a sin.

For me though, at the time I was working in an office where my boss was an openly gay man, and a co-worker was openly transsexual. It gave me a completely different view-point than the middle-class, Christian upbringing I had.  At that time, to be open about your sexuality was a big thing.  Not only were my workmates going against the norm, they were also going against the law.

I have to admit that it wasn’t until I knew those people who I realised that actually we are all the same and that no one deserves to be judged by another.  At 21, I came to the conclusion that if they weren’t hurting anyone then why should they not be able to live freely the life they chose?  I accordingly voted for homosexual law reform.

What has this got to do with mental illness?  It strikes me that those of us who have mental illness need to ‘come out’ too.  I know only too well that when we’re dealing with mental illness, we’ve got more than enough to think about let alone taking on activism.  But it seems to me that it is exactly what had to happen (and still happens) for those of a sexuality other than heterosexuality.  They had to come out in order to see change happen in our society.  Maybe it’s not fair, but no one can deny that coming out has helped open society to different realities.

Image credit: GO LIME Awareness for Mental Health (GLAMH)

Maybe it shouldn’t have been the responsibility of the LGBT movement to change the thinking of society.  In an ideal world, I’d go so far as to suggest as this should have been a responsibility of all human beings.  The thing is though, that the LGBT movement were the one’s who had a vested interest in getting laws and attitudes changed.

In the same way it is those of us with mental illnesses who have the vested interest in seeing the end of the stigma of mental illness.  It seems to me that I will directly benefit if there is more openness and acceptance of mental illness in society.  For my neighbours who don’t have a mental illness the benefit is indirect.

I’d like to think that everyone in society would want this, but the reality is that there isn’t the same obvious benefit for them, as there is for me.  They’re not the one’s who have to think carefully who they admit their mental illness to.  I do though, and in that respect I am little different from my transsexual work-mate of 30 years ago.

I believe we have a choice.  We can sit and wait, hoping that one day society will magically change its attitude to mental illness.  Or we can think about speaking up.  Coming out about our mental illness.  Because the more people who realise that they have a friend, neighbour, family member or work-mate with a mental illness, the more acceptable it will become.

It doesn’t need to be a big deal.  I don’t think we need to list off all our diagnoses.  Actually I believe that would be as off putting as if we listed off everything that was physically wrong.  We just need to let people know that mental illness is exists, and is not the scary thing society has thought it to be. If we can admit to our friends that we have, say diabetes, then why not mental illness?  This is exactly what the LGBT movement has done… shown that different sexualities are actually normal.

I don’t for one moment think that this is an easy ask.  There is a lot at stake.  I’ve simply come to the conclusion that I can’t just sit and wait, hoping that one day things will change.  It’s not going to magically happen.  But if each person takes a small step, as the LGBT people have done over years, and as other minority groups have also done in the past, then we start to make a difference.

♦

“We learned three crucial lessons from LGBT activists: We had to build a movement. We couldn’t be afraid to challenge our friends in power. And we had to give our cause a human face.”

 - Frank Sharry,  America’s Voice

♦

“We have got some very big problems confronting us and let us not make any mistake about it, human history in the future is fraught with tragedy … It’s only through people making a stand against that tragedy and being doggedly optimistic that we are going to win through. If you look at the plight of the human race it could well tip you into despair, so you have to be very strong.” 

―    Robert James Brown

Related articles

• Learning From LGBTs How To Change Minds (peteearley.com)
• How did we build an immigrant movement? We learned from gay rights advocates. (washingtonpost.com)
• Blog For Mental Health 2013 (infinitesadnessorhope.wordpress.com)
• Still Standing Up To Stigma (infinitesadnessorhope.wordpress.com)
• Demolishing Stigma (infinitesadnessorhope.wordpress.com)
• Illustrating Stigma (infinitesadnessorhope.wordpress.com)
• It’s All In Your Head! (infinitesadnessorhope.wordpress.com)

It’s All In Your Head!

What are we so afraid of?  Why does being told ‘it’s all in your head’ fill us with terror and completely write off any sense of being validated as a patient in need of help?

My view is that it’s all about the stigma of mental illness.  Somehow we’ve interpreted the message ‘it’s all in your head’ to mean ‘it’s not real’.  And we’ve done that for very good reasons.

I recently read an article about some work being done in understanding Gulf War Syndrome, which has many symptoms similar to fibromyalgia.  They have found that there is clear evidence of brain damage in sufferers, and one of the hopes is that in developing a test (a fMRI) to diagnosis the illness, it will lead onto the more accurate diagnosis of Fibro and Chronic Fatigue Syndrome.

Here’s a quote from that article:

“Many veterans have had difficulties getting benefits and treatment for a service-connected condition because doctors assumed they were either faking it or suffering from post-traumatic stress. “That’s a problem with all physicians — VA, military or civilian,” Baraniuk said. “If it doesn’t fall within their small world of known diseases, then the patient is nuts.”

It’s actually the same with Fibro (and I assume, Chronic Fatigue Syndrome), that patients are sometimes thought to be faking their symptoms, or somehow worse still, thought to be psychologically based… and therefore assumed to be somehow not real.

Maybe I have an advantage because I have both mental illnesses and physical illnesses.  I haven’t seen it as an advantage until now but it must be because I know that mental illnesses are real.  That means that I also know that if a doctor sees fit to tell me my physical illness is psychologically based, then I know that their opinion doesn’t remove my symptoms, and therefore my suffering, being real.

My Borderline Personality Disorder (BPD) is real.  The Anorexia I struggled with for years was real.  The Depression was real.  The Post Traumatic Stress Disorder (PTSD) was even real.

They were also ‘all in my head’.  They were all psychologically based, although some of them also affected me physically too.  No one could realistically deny that I was suffering, or that I needed real help to either fight, or manage these conditions.

To add to that, there were very real physical consequences to some of those illnesses.  For example, it is difficult not to accept that Anorexia, as well as being a mental illness, has profound effects on the body which need to be medically treated.  The fact that it is a mental illness does not take away the doctor’s need to treat the patient medically.

If those conditions that I have had or currently still live with, can be identified as psychological but still be treated, then does it really matter whether my fibro is seen as a psychological or a physical illness?  Personally, I don’t think so.  The symptoms are still there, as is my suffering.  Is it ‘all in my head’, or in some other part of my body?  In terms of how it is treated there maybe a considerable difference, but there isn’t a difference in terms of my very real need for help.

My opinion is that the problem with issues addressed by the quote above does not lie with the veterans who are suffering.  The problem is with the medical professional who deem it fit to view that something isn’t real if it is psychological.  Either way the patients with symptoms need help, but it seems too easy for doctors to cast someone aside because their symptoms are from a particular basis.

Even if the doctor wishes to put symptoms down to ‘attention seeking’, my view is that there is still a need for that person to be treated.  Maybe treated differently, but the person still needs help.  Right now it seems that a seeming psychological cause, let alone fake, is simply dismissed often.  That is so wrong.

I actually had a similar issue to this problem a few weeks back with the medical specialist who monitors the auto-immune condition I have called Graves’ Disease.  Graves’ Disease affects a number of parts of the body but primarily the thyroid gland, leading to hyperthyroidism and eventually something called thyrotoxicosis (when levels get toxic and life threatening).

My endocrinologist examined my blood results which indicated that my thyroid levels are currently in a safe range.  The problem for me (and I’d like to think it had been for her too) is that sitting in front of her, I had many of the symptoms of thyrotoxicosis. I can tell you that those symptoms were not pleasant and I was hoping that she would help me to address some of them.  I could accept that the blood tests suggested I wasn’t dying, but I was definitely suffering.

Interestingly she was seemingly interested in helping me to alleviate the symptoms until she went to check my case with her supervisor.  Then she came back and told me that because the blood results were fine, there was nothing that needed to be done.  I was shown the door, and actually later I found she had then formally discharged from the Thyroid specialist service I had been under for several years.

My point is that I was still suffering, but she wasn’t interested.  There’s something wrong when doctors dismiss patients when there is clear evidence of suffering.  Just like the Gulf War veterans.  There is suffering, and whether it is faked, ‘all in the head’, Post-Traumatic stress, or clear sign of physical brain damage (as the fMRI will detect)…  there is a patient who is suffering, who has lost quality of life…  and needs help.

I think it’s sad that the general view is that if something is ‘all in your head’ that somehow the pain and suffering is not real and does not need treatment.  Somehow we need to move away from that view because while it remains, it increases the stigma of mental illness because that too, is seen as not real.  It also increases the likelihood that people won’t seek help when they need it.

But as well as the general population view on this, I am convinced that it is medical professionals that need to lead the way in change.  What they have in front of them is a patient who needs help.  That’s actually what matters.

PS.   There is evidence that the situation with my Graves’ Disease is actually quite common, where the blood results indicate everything is ‘normal’ but the patient reports a very different reality in terms of symptoms.  I’m not aware of a substantiated reason for this though.  Unfortunately many health professionals choose to deny the existence of such an anomaly and so patients end up going without the help they may need.

♦

“Each patient carries his own doctor inside him.” 

―    Norman Cousins,    Anatomy Of An Illness

♦

“A doctor, like anyone else who has to deal with human beings, each of them unique, cannot be a scientist; he is either, like the surgeon, a craftsman, or, like the physician and the psychologist, an artist. This means that in order to be a good doctor a man must also have a good character, that is to say, whatever weaknesses and foibles he may have, he must love his fellow human beings in the concrete and desire their good before his own.”

Auden, W. H.

Related articles

• Researchers tie Gulf War illness to brain damage (usatoday.com)
• The Black Mark Against Mental Illness  (infinitesadnessorhope.wordpress.com)
• What My Doctor Won’t Tell Me (infinitesadnessorhope.wordpress.com)
• Brain Changes Could Contribute to Gulf War Illness: Study (news.health.com)
• Researchers tie Gulf War illness to brain damage (usatoday.com)
• Researchers find Gulf War Syndrome is a real illness (fellowshipofminds.wordpress.com)

Not Sissies… Or Paupers

The Little Boy and the Old Man

Said the little boy, “Sometimes I drop my spoon.”
Said the old man, “I do that too.”
The little boy whispered, “I wet my pants.”
I do that too,” laughed the little old man.
Said the little boy, “I often cry.”
The old man nodded, “So do I.”
But worst of all,” said the boy, “it seems
Grown-ups don’t pay attention to me.”
And he felt the warmth of a wrinkled old hand.
I know what you mean,” said the little old man.”

― Shel Silverstein

A few days ago the picture below sprung up on my screen, from my friend Sue’s Facebook page.  There could have been no better timing for me, for the issue of old age had been sharply thrown in front of me through my own family relationships.  “Old age ain’t no place for sissies” is so true that I think we are mostly inclined to try to ignore this truth.  Another friend’s elderly (and wise) father later added that “it ain’t no place for paupers too“.

Image credit: FB – Sue Fitzmaurice (used with permission)

I couldn’t tell you exactly when it happened, but sometime in the last perhaps five to seven years, my parents aged to a point where their welfare and health became almost more important than my own.  Remember that I don’t have children, and the most I have had to be concerned about someone else was my cat (who passed away last year).  Now I had elderly parents to worry about.

Until some (usually) undefined date on our adulthood I think it is easy for us to exist in our own worlds, and tending our own needs.  Somehow there’s a kind of “they’ll be okay” approach applied to older parents, and we know (in the back of our minds) that sometime in the future, we might have to pay a bit more attention to their needs.

For me, this probably happened for with regard to my mother’s well-being about seven years ago when she started to have a number of falls.  After that I found that if I was walking with her, I was watching the surface she was walking on for her safety.  It just happened.  She didn’t ask.  Actually she would never ask as she has always been fiercely independent.  I simply found myself looking out for her, consciously wanting to avoid another fall for her.

As for Dad, who died nearly two years ago, my change in attitude toward his well-being came at the time of his heart attack, about four years ago.  Dad was in the city one day and got accidentally knocked over by a cyclist on the footpath.  It triggered a heart attack.

Amazingly Dad drove himself to my home (about 10 minutes away), and came in saying he felt a bit off colour.  I assumed, at most, he might need me to drive him home, as I wasn’t aware of the severity of his symptoms.  He looked fine.  When he eventually told me that he thought I should call an ambulance, I admit I thought he was being dramatic and we would be ‘told off for wasting their time’.

It wasn’t a ‘waste of time’ at all, and it was the first of several ambulances that would come to my home, for Dad in the next few years.  Again, like with mum I found myself wanting to check if Dad was okay.  Sometimes he was, and unfortunately other times he wasn’t at all okay.  Dad later died in my home.

It almost felt like I had lost my parents, and that I had become the parent to them.  I said that once to someone and they told me not to be silly because my parents weren’t children.  That’s not what I meant to imply.  What I was feeling was that I now had responsibility for them.  It just happened, as they aged.

My mother is now 85 and widowed.  She is facing some major surgery in the next few weeks.  Because I have been the main family member to provide daily support for her since Dad died, I now find myself dealing with what is ahead for her.

While I am particularly concerned with how she might cope with the surgery, I find myself missing my Dad even more than usual.  Why?  I admit it is because if he were still alive he’d be the one making decisions and arrangements with her.  I’ve ended up the ‘parent’ (or my therapist tells me ‘the spouse’)and while I will do everything I can for her, I seriously wish I didn’t have this responsibility.  I desperately want to go back to when my parents were young, healthy and going to ‘live forever’.  Yet it’s not like that, and it is really hard.

The reality is that my mother is doing pretty well for her age.  Out her dining room window, in the apartment she has at a retirement village near my home, she can often watch residents of the secure dementia unit (across the car park) pacing.  They’re basically walking in circles, within their confined space.  Confined by fences, walls and locked gates.  It’s hard to watch, even at my age, without wondering, ‘is that how I’ll end up?‘  I don’t need to wonder what my mother thinks.  She’s told me, and told me what to do about it.  Another weight I don’t want to bear.

Yesterday I happened to come across a blog by Chris Curry at Healthy Place.com.  I quite like his blog about stigma, and was challenged in my thinking by his title, Remembering the Forgotten: Your Response to Dementia.  It seems that most of the elderly end up with some form of memory loss and/or confusion, on a scale of ‘nothing major’ to ‘residing permanently in a secure dementia unit’.

Who would want this for themselves, or for their parents?  Not me, that’s for sure…  but then off-spring don’t generally get a choice of what they will have to deal with.  No one gets a choice.

In his blog Chris suggests that the stigma associated with dementia is perhaps the greatest of all mental illnesses.  I don’t think I had stopped to consider dementia as a mental illness, but it is an illness of the mind.  And how many jokes do we choose to laugh at about dementia and the memory of the elderly?  It’s easy because no one is going to fight back like we might choose to fight against jokes of say, bipolar for example.

It makes me think.  When I say that mental illness is okay and shouldn’t be the subject of stigma, then I need to include in that dementia and other illnesses related to the degeneration of the mind in the elderly.  If we fight for ourselves, then we fight for those who ain’t sissies too.  I wouldn’t like to have to choose one mental illness over another, but I’m sure getting the feeling that old age ain’t much fun.

Maybe that’s pessimistic, but then I look back at the last say, five year of my parents lives and I wouldn’t have wanted their health for anything.  And actually they’ve got off pretty lightly.  I look at the final years of my grandparents too.  I wouldn’t choose that either.  I think that actually the aging process deserves more respect than we often give it.

♦

“In one thing you have not changed, dear friend,” said Aragorn: “you still speak in riddles.”
“What? In riddles?” said Gandalf. “No! For I was talking aloud to myself. A habit of the old: they choose the wisest person present to speak to; the long explanations needed by the young are wearying.” 

―    J.R.R. Tolkien,    The Two Towers

Related articles

• Honour Thy Parents (infinitesadnessorhope.wordpress.com)
• Perspective (infinitesadnessorhope.wordpress.com)
• My Journey Through Grief (infinitesadnessorhope.wordpress.com)
• Dancing with Dad (infinitesadnessorhope.wordpress.com)
• Remembering the Forgotten: Your Response to Dementia (healthyplace.com)
• No Delusions About Dementia (dawnrobinsonwalsh.wordpress.com)

Blog For Mental Health 2013

I am joining the project to Blog for Mental Health 2013, a project speared-headed by the wonderful  A Canvas Of The Minds, where some good friends of mine hang out and come up with brilliant material on mental health issues.  I realise this is the second campaign I’ve joined in a week (the other one you can check out on Still Standing Up To Stigma), but I see them as both being important and want to be part of both.  Also when my good friend Ruby pledged me, I just knew I wanted to get involved.

Blog for Mental Health 2013 is catching on like wildfire.  Everyone wants to be part of it and that’s fantastic to see so many bloggers committed to talking about mental health.  So here’s what you need to know:  This is not an award, but rather an exciting project to get a community of mental health bloggers to show that they are proud of their lives, that they are writing for themselves as well as for those who have not yet found their voices, that they are ensuring no one ever has to feel alone when dealing with mental illness. For me, those are some excellent reasons to be a part of this.

The badge that goes with this project, is designed by Lulu and you’ll see that repeated over on the right of this screen.

The next task is to take the pledge, and therefore:

I pledge my commitment to the Blog For Mental Health 2013 Project.  I will blog about mental health topics not only for myself, but for others.  By displaying this badge, I show my pride, dedication, and acceptance for mental health.  I use this to promote mental health education in the struggle to erase stigma.

Step two is to link back to the person who pledged me, Ruby Tuesday of I Was Just Thinking. . . and also co-owner of A Canvas Of The Minds.

Step three is a short biography about my mental health and what it means to me.

My mental health tends to revolve around labels such as Borderline Personality Disorder (BPD) and Depression with frequent visits of Post Traumatic Stress Disorder (PTSD) and eating disorders.  That said, labels don’t actually mean much to me apart from a way for me to identify reasons for some of my behaviours, thoughts and feelings.  I am me, I have a mental illness, and to me, that’s what matters.

Mental illness makes achieving mental health harder than usual.  There are extra bridges to cross, there is stigma to face, and there are battles to win.  But it is possible. 

The mental illnesses that I have are with me for life (BPD is part of my personality) but I view myself as having mental health when I can manage the symptoms and live the life that is important to me.  Right now, I’m doing that and it makes me happy.  It doesn’t mean that there are no struggles, but it does mean I can enjoy mental health just as much as the next person down the street.

Am I crazy?  Probably.  Is it ‘all in my head’?  Absolutely, that’s where my brain resides.  Is it easy?  No, it’s damn hard but living this way is so much more fulfilling than the life I barely existed in over years past.

Being part of this project is important to me, because I know how hard it is to live in this society where mental illness is not seen as okay.  I want to do my bit to spread the word that it is totally okay.  I not only want to make life easier for other people who have mental illness, but I also want to contribute a message that prepares our world to be more accepting of mental illness in the future.  May the next generation not have to fight with stigma.  May they be able to find the acceptance and peace they deserve.

Was that short?  Probably not.  Sometimes I just can’t help myself.  The final step is to pledge five bloggers who have “proven their mettle in my eyes as mental health bloggers”.  Hmm.  Actually this is a bit that I find hard.  I know that it is a way to get other bloggers involved, but personally I don’t want bloggers I could pledge to feel somewhat obligated.  I know obligation is not the intention, but I also know how easy it is for some of us to feel obligated.

So I’m not going to pledge any, except to say that if you write about mental health, even just some of the time (like me) then please consider getting on board with this project.  I honestly believe the more we all speak out about mental health, then the better place we create for ourselves and others to live with mental illness.  So check out the initial post – Blog for Mental Health 2013 and get involved.

One final note from A Canvas of the Minds, if you are getting on board…

“we are launching a Blog For Mental Health 2013 Official Blogroll!  So, in addition to linking back to the person who pledged you, please include the link to the original post in your piece.  As this gets passed along, link back or click here and leave a comment containing the link to your pledge, and we will put you on our Blog For Mental Health 2013 Official Blogroll page!”

Show the world our strength, show them our solidarity, show them what we are made of.  Take the Blog for Mental Health pledge and proudly display the badge on your blog!

♦

“Sometimes the world is so much sicker than the inmates
of its institutions.” 

―    Joanne Greenberg,    I Never Promised You a Rose Garden

Still Standing Up To Stigma

In doing my research, then writing and keeping up with feedback later, for my post The Black Mark Against Mental Illness I was reminded of just how strong the stigma against mental illness is.  People feel very strongly about being labelled as having a mental illness, and I don’t think that’s so much about the label (or the treatment that might be needed), as the attitude they expect from the general public, as well as the attitude they apply to themselves about having a mental illness.

That post made me realise anew just how hard it is to accept a diagnosis of mental illness, and had me thinking that we have to do something about this because it’s stopping people from getting the help and treatment they need.

So it was timely when I discovered Healthy Place’s Stand Up For Mental Health Campaign, which starts today.  This campaign in about standing up to, and eliminating the stigma against mental illness.  By taking part in this, I am saying:

There is nothing “wrong” with having a mental illness.

♦

People with a mental illness are not alone in what they are dealing with.

♦

People with a mental illness shouldn’t feel ashamed or forced to hide their mental illness symptoms and desire for effective treatment.

♦

Mental health stigma will no longer be tolerated.

One thing I have been reminded of recently is being told their illness or symptoms are ‘all in their head’ is scary for people.  I’ve particularly noticed this amongst fibromyalgia sufferers who, like me, often have a hard job getting doctors  to take their suffering seriously.  When any suffering impedes our daily life, it is serious and I think it is so sad that this is a common attitude struck by people with chronic pain conditions.

As quite rightly pointed out to me the other day it IS ’all in their head’.  After all, whether it is fibromyalgia, which has it’s grounding in neurological functioning, or a specific mental illness, it does come from the brain… which is found in the head.  Why should something based in the head be something to be feared or ignored?  It shouldn’t be.  It is just as important as if I have a twisted ankle which affects my walking.

When people are suffering, they shouldn’t need to fear the reactions of either medical staff, media, or their friends and family.  Whatever the basis of suffering is, it is real and should be treated as such.

Yet again, I go on about stigma and now I have joined this Campaign.  I think that’s what it’s going to take.  For us to continually chip away against the attitudes that exist.  Every time we contribute to the conversation against stigma, then we are creating an ocean full of acceptance and understanding for everyone who suffers.  Even if we can’t change the attitudes we personally experience, it would be great if we made it easier for those ahead to seek and get the help they need.

♦

“How would your life be different if…you stopped making negative judgmental assumptions about people you encounter? Let today be the day…you look for the good in everyone you meet and respect their journey.”

~Steve Maraboli, Life, The Truth and Being Free

Related articles

• The Black Mark Against Mental Illness (infinitesadnessorhope.wordpress.com)
• Stand Up For Mental Health Campaign (healthyplace.com)
• HealthyPlace.com Launches National Stand Up For Mental Health Campaign (prweb.com)

The Black Mark Against Mental Illness

‘DSM-IV’ Image credit: Wikipedia.com

There’s been quite a bit of conversation going on in different places about the upcoming Diagnostic and Statistical Manual 5 (DSM-5), which will finally make itself useful in May 2013.  There’s a lot of controversy over various elements of it and I could take up many posts just discussing those. I must remember to get back to the intended change of name for Borderline Personality Disorder (BPD).

For today though I want to talk about the issue of the stigma against mental illness and how it is making itself seen, and heard in the fibromyalgia world.  At the outset it’s important to point out that fibro is NOT a mental illness, nor is it categorised as one.  But there is a new disorder mentioned in the DSM-5 that has a lot of people with fibro worried.

Under the DSM-5 there is a new diagnostic category called Somatic Symptom Disorder (SSD) which will apparently mislabel some people with medical disorders as have a mental disorder.

A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months:

1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or

2) a high level of anxiety about their health; or,

3) devoting excessive time and energy to symptoms or health concerns   (1.)

The concern of fibro patients I have been reading of in recent days is that their fibro will be re-labelled as SSD if they have this high level of anxiety and thought to their fibro symptoms.  As a fellow sufferer of fibro I know all too well that it is very hard not to be anxious about symptoms.  They are literally new every morning, and there is a constant worry over how to treat, and manage the symptoms as well as getting through daily life.  So I get their concern that they might be labeled with SSD.

Do I want yet another label?  Not particularly, but I fail to see the whole issue with quite the level of dismay I have read recently.  I will still be a fibro sufferer, and therefore a medical patient.  SSD does not take away my fibro.  Regrettably what it does is give me, and no doubt millions of others, an extra label.

I know for many fibro patients, they fight hard against suggestions that fibro is ‘all in their head’ and has a psychological component.  For me though, I am quite happy to accept that there is a psychological element in my fibro, and actually one of the most helpful treatments I have is access to my psychotherapist.

That doesn’t mean my pain and fatigue isn’t real.  I can assure you it is.  But I recognise that my emotional well-being plays a part in how much pain I am in.  Most people though, don’t want to think this way and I suspect that stigma and the general public’s view of mental illness is the reason for this.

What  concerns me is the fear that I have seen fibro patients display as they write about being labelled as having a mental illness.

“WTH! I’m not mental!”

“This is such BS!! I know my pain is real and not in my head and has it made me crazy? Yes!! But I wasn’t before fibro moved in!!”

“this made me want to cry… people already do not believe me so I push myself everyday to prove some one hurting so much everyday can be strong…. so they call us crazy when we just want to know whats wrong with us, be normal, and happy…”

“My doctor told me all fibro patients just need a good psychiatrist !”

“the pain is more than real…its not in our heads!!!”

“I have nightmares about people close to me not believing what I go through with FM and belittling the severity of it. I wake up crying and feel awful for hours afterwards.”

“Please don’t make it harder for all of us than it already is. We are in enough pain as it is.”

“This is not a made up illness. It is real. People are suffering immensely.”

“The pain is REAL.  I have it right this minute in my whole body and it is excrutiating (sic), is that all in my head.”

If you are led to believe that your medical illness will disappear, and be replaced by a mental illness that takes no account of the level of pain and suffering you experience on a daily basis, then I can understand people being concerned.  But I don’t think that is exactly what is happening.

What does concern me is that when I read the comments above, I see how fearful people are of being labelled with a mental illness.  From this range of comments is suggests that people see mental illnesses as made up, not real, all in our head and of no significance.

And while I know first-hand that the pain of fibro is very real I know that the pain of mental illness is just as real, if taking a slightly different form.

All I can take from this is that while fibro sufferers have a shared fear of not being taken seriously, more worrying to me is the sheer size of stigma which makes people fearful of having a mental illness.  If everyone shares this fear, then they are likely to not seek treatment if they think they have any sort of mental illness.

Actually mental illness is real, but it is also survivable.  If the SDD diagnosis can be used carefully and appropriately then maybe people with overwhelming and disabling worries about their illness, whatever it is, can be helped.  That doesn’t need to stop people with fibro getting the treatment we need.

I am inclined to think there is a little scare mongering going on.  A little information is blown out of proportion.  And then the masses get scared.  Maybe I’ll be proven wrong.  But then I’m so used to mental illness, another label really won’t worry me.  I’ve got plenty already.  It does seem though, that stigma is alive and kicking and it’s not at all helped by scare tactics.

Related articles

• What My Doctor Won’t Tell Me (infinitesadnessorhope.wordpress.com)
• Your Physical Illness May Now Be Labeled a Mental Disorder (psychologytoday.com)
• Mislabeling Medical Illness As Mental Disorder (psychologytoday.com)

Dare To See It Differently Campaign

My friend Kevin, over at Voices of Glass introduced a new campaign a few weeks back which I fell in love with straight away.  I immediately said to Kevin “count me in“.  Since then it’s been something I wanted to get on to, but there were other issues to discuss, and I admit I got side-tracked.

The Dare To See It Differently Campaign recognises that there are extra challenges in life when we are faced with health difficulties, including mental and physical disabilities.  They make life that bit harder.  They can include hardship, injustices, stigma and discrimination in many guises.  But why should it be that way?  Life is hard enough without these added burdens.  Enter the Dare to See It Differently Campaign.

Kevin’s suggestion is:

If you or someone you love faces physical or mental health challenges why not copy and paste the relevant logo onto your blog or site and with it write why you consider yourself not to be disabled but instead to be differently abled!

I happen to have both mental and physical health challenges, and therefore I am posting both images.  It’s funny though, because I can’t get my head around the idea of being disabled.  Partly I think it’s somewhere I just don’t want to go, but more so, I just don’t see myself that way.  I like this quote from Fred Rogers:

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.”

― Fred Rogers, The World According to Mister Rogers: Important Things to Remember

In this, he really looks at disabilities from both angles, mental and physical and even though I know my abilities are sometimes restricted by my physical and mental health issues, I don’t see it as a disability.  Yes, they slow me down.  Considerably.  But I don’t often have to grind to a complete halt.

Recently the ‘good’ NZ Government decided to switch me from a ‘temporary’ sickness benefit to what is generally recognised as a more permanent ‘invalids benefit’.  The basic difference is in how long the doctor thinks it will be before I am able to work in some type of paid employment of more than 15 hours per week.  Right now that is restricted because of being unable to get medication to treat my physical challenges.  In reality, it actually suits me to be on the invalids benefit because I don’t have to provide medical certificates every thirteen weeks, but rather every two years.  That said, I struggle with that word ‘invalid’.

I’m not an invalid.  To me an invalid is someone who can’t get out of their bed and probably can’t walk.  I’ve got this mental picture in my head (probably from childhood) of an invalid, and it’s not me.

The thing is though that it is just another word, just like disabled.  I am still able to live my life and contribute to society, just not in the usual paid, 40 hour week capacity.  So with that in mind, I go for Kevin’s suggestion of diff-abled.

Now I’m going to throw a spanner in the works. [I hope that’s not a kiwi saying and you have no idea what I am saying.}  And apologies to Kevin if I am getting off the track, but my mind led me here as I was writing (it’s scary where it sometimes leads when I write).

What I’m thinking is that we often talk about invisible illnesses not being as accepted in society as those which can be physical seen.  All of my illnesses come under the category of invisible illnesses and I wonder if I am contributing to stigma of these, if I refuse to see myself as disabled or even an invalid?  Maybe (and it is only maybe because I am simply thinking out loud) if I accepted myself as being disabled, then other people could accept it too.  Maybe then there would be better recognition of the challenges I face.

It’s timely that yesterday I had a random conversation with my brother.  He’s very special to me and I appreciate his opinion, even if I don’t always go along with it.  I had commented that my psychiatrist had labelled me as weird (I’m Just Plain Weird). My brother couldn’t accept that and was adamant that I was as normal as he was.  I guess it was a compliment (in a way) because he’s certainly had to witness some weird stuff over the years.  I found myself arguing the point.  I didn’t want to be normal.  But then I don’t want to be labelled as disabled.

It’s a hard one to get my head around and I would love to hear what you think.  It seems to me that perhaps it is a bit of a two-edged sword.  I want my illness to be accepted and acknowledged yet I don’t like the terminology that comes with it.  What do you think?

I will leave you with this rather long, but insightful story from (again) Fred Rogers.  I love it.

“There was a story going around about the Special Olympics. For the hundred-yard dash, there were nine contestants, all of them so-called physically or mentally disabled. All nine of them assembled at the starting line and, at the sound of the gun, they took off. But one little boy didn’t get very far. He stumbled and fell and hurt his knee and began to cry. The other eight children heard the boy crying. They slowed down, turned around, and ran back to him–every one of them ran back to him. The little boy got up, and he and the rest of the runners linked their arms together and joyfully walked to the finish line.

They all finished the race at the same time. and when they did, everyone in the stadium stood up and clapped and whistled and cheered for a long, long time. And you know why? Because deep down we know that what matters in this life is more than winning for ourselves. What really matters is helping others win, too, even if it means slowing down and changing our course now and then.”

― Fred Rogers

An After-Thought

It’s occurred to me that my 13 year old nephew describes everything he thinks is great as ‘sick‘.  I guess ‘sick‘ is a 13 year old’s way of saying ‘love it’.  Hmmm.

Related articles

• I’m Just Plain Weird (infinitesadnessorhope.wordpress.com)
• Dare To See It Differently Campaign! (voicesofglass.com)
• Dare To See It Differently Campaign! (prideinmadness.wordpress.com)

A Bit Mental (Lilo The Waikato)

Image credit: Lilo The Waikato (used with permission)

Yesterday I watched a great piece of television, and what’s more it was on mainstream television channel TV3.  The scheduling wasn’t great but at least it got there.  The programme was all about raising awareness of depression, and that has to be a great thing.  If you want to watch it, here’s the link.  It will be there for a couple of weeks.

Inside New Zealand – A Bit Mental – Special – On Demand – TV3.

Location map of Waikato River, North Island, New Zealand (Photo credit: Wikipedia)

A Bit Mental is a documentary about Jimi Hunt, a New Zealand man who has struggled with depression for two years.  As part of his recovery he created a challenge for himself of travelling down New Zealand’s Waikato River… on a $8 lilo air mattress (in other words cheap!)… and in doing so raising awareness for depression.  If you’re not sure what a lilo is, that’s the yellow thing Jimi is floating on in the picture above.  Just plastic and air.  He went through 11 in the whole trip as he succumbed to punctures.

He described it as:

“a ridiculous journey to raise awareness for a super serious problem.”

For those in other parts of the world, the Waikato River is our longest river at 425 kilometres.  There is some gorgeous scenery but some very serious white water known as the Huka Falls, as well as a few hydro power stations to get through.  In other words it’s a crazy journey that no one had done before on a flimsy plastic lilo, but Jimi did it.  The link above will give you the full story.

Jimi was told by his doctor that his depression had a chemical basis, rather than psychological and so his recovery was about correcting that chemical balance.  I admit I was slightly concerned when he commented that he wasn’t bad enough to need medication.  It was one of those things that just didn’t sit right with me.  Maybe because I was ‘bad enough’ to need medication.  Was he saying that because I needed depression I was much worse?  To me, I was just different.  I decided to drop the issue in my head, maybe I was seeing things that weren’t there (it happens often!).

Back to Jimi’s recovery, he was challenged by his doctor to get some exercise, get fit and set some goals.  And so Lilo The Waikato was born with his aim to raise awareness for depression and funds for Lifeline (a 24 hour telephone counselling line).

The Huka Falls, Waikato, New Zealand (Photo credit: Wikipedia)

The thing I really liked was that along the journey Jimi set himself up so that he had to ask for help, something which he recognised as key to his recovery, and something that he took a while to learn.  He had to ask for accommodation (the journey took about two weeks) and meals.  He had to ask for the occasional tow.

It was a practical reminder of how asking for help is so important when struggling with depression, and mental illness.  I guess it rang home to me because it is something that I recognise I have struggled with at different parts of my mental illness journey.  Some parts would have been so much easier, and less painful had I asked for help at the time.  Jimi recognised it as something that would have made a big difference to his recovery too.

What Jimi did was pretty amazing.  You wouldn’t get too many people who would take on such a challenge, let alone while raising awareness for mental illness.  And what’s more, there were many people (including more than 20,000 Facebook followers who encouraged, supported and followed his journey).

All this got me wondering, as I watched the programme, what awareness and support could be raised for other mental illnesses?  There is no official hierarchy of mental illnesses, but I’m inclined to think that depression is a little more ‘acceptable’ to the general public than other mental illnesses.  So what if there was a person with say, Schizophrenia or Borderline Personality Disorder (BPD) who could raise this kind of acceptance?  Would it work?  Would the general public just say “s/he’s crazy”?

No doubt plenty of people said that Jimi was crazy.  It’s certainly not something that I would choose to do.  But people got behind him and supported his cause.  It would be great to see more people backing a greater awareness of all mental illness.

Currently there is a woman, Annie Chapman, who is walking the length of the North Island – using the Te Araroa Trail (1600 kilometres), here in New Zealand to raise awareness of the need for better treatment options for those with mental illnesses.  It’s a completely different undertaking being a protest walk (known here as a hikoi) with community meetings along the way.  What interests me is that her Facebook followers amount to under 200.

Why is there such a difference in support?  I guess there are a lot of reasons, but I wonder whether the need to ask for help when you’re battling depression is more acceptable somehow to the public than the nitty-gritty of treatment options for all mental illness.  I don’t know, and perhaps I’m not being fair, but it does raise the question of what is acceptable to the public and what is too much?

What I do know is that what these two people, and probably others I haven’t heard about, are doing is fantastic.  Whatever is done to make mental illness easier to talk about, and more widely acceptable has to be great.

♦

“One must still have chaos in oneself to be able to give birth to a dancing star.” 

―    Friedrich Nietzsche

Related sites

• Lilo the Waikato (facebook.com)
• 
  http://www.depression.org.nz/
  
• 
  http://www.beatingtheblues.co.nz/
  
• 
  http://www.thelowdown.co.nz/
  
• 
  http://www.lifeline.org.nz/
  
• Hikoi for healthy choices in Mental Health (facebook.com)

Like Minds, Like Mine

We all know how good it is to find that someone thinks like we do. A like mind, like mine. When we find that like mind is worth connecting and sticking close. Especially if we’re a little bit different from most.  Finally someone gets us.

In New Zealand there is an organisation dedicated to a public education programme working to reduce the stigma and discrimination associated with mental illness in New Zealand. I love it. A whole organisation, funded by the government (Ministry of Health) no less.

Check out Like Mind, Like Mine’s website  and their Facebook page for more information.

I think this is really exciting to have such an organisation working on stigma, something which I am passionate about.  They are doing a wide range of activities to promote this message and for some years there has been a television advertising campaign working to spread the word that anyone can have a mental illness.  Like Minds have used prominent Kiwis (at times) to spread this message, people who have struggled with mental illness themselves.  Names like ex-All Black John Kirwan, musician Mike Chunn and fashion designer Denise L’Estrange-Corbet all took part in early campaigns to let people know that people like us, (and them) suffer mental illnesses.

So I was really honoured to be interviewed recently for their latest newsletter.  You may as well have told me I’d won an Oscar when they asked to talk to me about this blog.  Wow!  For me, it’s a great opportunity to link up with an organisation doing something I feel so strongly about.  It will also, hopefully, let more Kiwis know about my blog (as well as the other kiwi blog featuredin the article).  If you’d like to read what they had to say about me, and many more topics, here’s the link to their PDF version:

http://www.likeminds.org.nz/file/Newsletter-Archive/PDFs/lmlm-51_web.pdf

♦

“Have no fear when darkness falls because there’s a light that shines within us all. There’s a flame that burns in every heart. It’s the will we have that lights the spark. Once in every lifetime, there’s a chance to stand apart.”

 ~ Theme song from 2002 Winter Olympics

Related articles

• Demolishing Stigma (infinitesadnessorhope.wordpress.com)
• Self-Stigma… Am I My Own Worst Enemy? (infinitesadnessorhope.wordpress.com)