I Am Not A Demented Chameleon!

Do you remember back in the playground when the overweight kid got called “fatty”?  And the one who told some fibs was branded “liar”?  There were endless names that children named other children without a care in the world.  We (and yes, I probably was one of them too) didn’t know how hurtful those names could be.  Perhaps half the time we didn’t even know what the words meant.  We had simply heard them from others, and thought we’d give them a try ourselves.  I think it’s where the re-phrased “sticks and stones will break my bones but names will always hurt me” fits.  And yes, those names did hurt.

Today, I and all my friends who have Borderline Personality Disorder (BPD) with me, got called names.  We were called  ‘demented chameleons‘.  Apparently Borderlines (like Sociopaths) they said, are ‘demented chameleons‘.  The original name was tossed at sociopaths (as the site was focussed) and my thoughts about that are another issue   I just got angry when I saw someone throw Borderlines into the fire, calling us the same name, with probably no thought at all.

It’s something that I can walk away from.  I’m used to it.  This type of name-calling happens for people with BPD all the time sadly.  Actually it happens to all people with mental illness all the time.  I can walk away and that’s what I did.  The person who labelled me a ‘demented chameleon‘ probably doesn’t personally know anyone with BPD, and simply read it somewhere on one of the awful websites that set out to degrade us.  It is probably a combination of stupidity and ignorance… and so it deserves my walking way.

The difficulty I am left with though, is that ignorant comments like that get read by others, and believed.  It’s what builds up the stigma against both BPD and mental illness as a whole.  That’s what really gets my blood boiling.  How dare they blast me with their stigma but also contribute to the overall stigma that all of us with mental illnesses face.

This is my idea.  For each time I see such a combination of stupidity and ignorance, I need to post here, my opposing view.  Maybe it might not be the same people that read both accounts, but in my world one can still outweigh the other regardless.  If people choose to feed the world with negative views of me, then I can feed the world with the positive.  Does that mean you are going to be reading posts like this everyday?  No, that’s not my intention.  But when my blood boils, I need to speak out.

People with BPD are not ‘demented chameleons“.  If you stop to get to know someone with BPD you will find that actually we are beautiful people.  We are generally very caring people.  That’s part of our disease.  But we are not demented.  While we may change aspects of ourselves in how we come across to the world. we are not cynically one thing one day and another tomorrow.  Moreover that changing does not happen out of an intent to hurt and manipulative.  It is simply who we are as we battle with the internal struggle to own who we are.  It’s not easy having BPD, and name calling such as this doesn’t help us.

I suspect that most people have no idea about BPD.  The label tends to draw a blank expression on the faces of those who hear it.  BPD is  not well known (like say, Bipolar) and is certainly not well understood.  But I will not sit quietly and see myself and my friends named as ‘demented chameleons‘.  That simply comes from ignorance.

And now having said that, I walk away and breathe.  Frankly, the people who choose to live in such ignorance are missing out on you and me.  Emphasis on the missing.  I almost feel sad for them.

Ending on a lighter note… I have been called a ‘demented chameleon‘ but I’m still waiting for the ‘incorrigible’.

Image credit: Used with permission of Sue Fitzmaurice. Facebook: Sue Fitzmaurice, Author

Image credit: Used with permission of Sue Fitzmaurice.
Facebook: Sue Fitzmaurice, Author

PS.  Victory after Publishing.  I’m happy to see that the offending material has now been taken down

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 

― Maya Angelou

Those In Peril On The Sea

Going back a few years, I remember having to sing hymns in high school Assemblies, three times a week.  The hymn that springs to my mind right now is this one (well, this is the first verse):

Eternal Father, strong to save,
Whose arm hath bound the restless wave,
Who bid’st the mighty ocean deep
Its own appointed limits keep;
Oh, hear us when we cry to Thee,
For those in peril on the sea!

I knew it was a hymn often related to the Navy, and I knew it was old (written in 1861) but I really had little idea of what the words we were singing meant.  Wikipedia tells me it is something related to Psalm 107 about those being shipwrecked and calling for God’s mercy.

My thinking is that those in peril on the sea had no hope, and the issue of being no hope (sometimes) has been weighing heavily on my mind this week.

It was two and a half years ago that a man collapsed in my house and I had to perform Cardiopulmonary Resuscitation (CPR) on him in an effort to save his life.  I did CPR for 20 minutes.  If you’ve ever had to do it, you will know that it is an extremely physical procedure and in that time I completely exhausted myself.  But I had no thought that there was no hope, and so I kept on.  At one stage I heard a rib crack, and I thought ‘Dad is going to be really sore tomorrow with his cracked ribs I’ve just given him‘.  Still, I believed there must be hope…    and so continued.

Eventually paramedics arrived and took over.  They continued to perform CPR for another 20 minutes before telling me (and my mother who was watching all this) that there was no hope.  He had gone.  My Dad had died.

What was I hoping for?  I guess that the treatment I (and then the paramedics) were giving him, would revive his heart and bring him back to the person I knew. To bring recovery. I wanted him to be saved from his ‘peril on the sea’.

Image credit: John Desjarlais/Wikipedia.com

 

Then I started thinking about hope and how it applies to mental illness.  It’s something I talk about regularly because I believe that having hope is what makes the difference to me getting through my mental illnesses.  For me, there is hope of treatment, both pharmacological and psychotherapeutic.  My main diagnosis of Borderline Personality Disorder (BPD) is a little tricky because as it forms part of who I am (my personality) it can’t just be removed.  For me, management of the symptoms of BPD is what I hope for, and right now I am pretty much achieving.

But is there that hope for all mental illnesses?  Most of us at least have hope of management of symptoms , if not complete recovery but it’s occurred to me recently that actually that hope is not there for all illnesses.  What if there is no medication known to treat the illness, and what if therapy is not known to be particularly effective?  What if most sufferers actually aren’t motivated to seek treatment, even if it was available?  While again, I need to emphasise that I am not qualified in psychology or psychiatry, and so I am speaking of my personal thoughts rather than proven fact, it does seem that there is little hope for those people.  And I’m talking about four in every hundred people.

This fills me with sadness because it is hard enough to live with mental illness when at least someone can see hope.  It also fills me with sadness because people close to me are in that number and I desperately want hope for them.  My heart is also filled with sadness because these people perhaps struggle against the stigma of mental illness the most.  I haven’t named the illness purposely, because as a society there tends to be little, to no compassion for these people.  They’re hardly even treated as people.  But what if it were us?

It’s not my role, or my desire, to be dictating who we should, and shouldn’t feel compassion for but I will tell you my own way of looking at this.  Sometimes even people with mental illnesses (like me) do things that aren’t nice, aren’t acceptable and aren’t what healthy human beings would choose to do.  I don’t like their behaviours one little bit.  I don’t like it when innocent people get hurt.  There needs to be appropriate punishment when crimes are committed.

But that doesn’t take away from the fact that the people with mental illnesses who did these things are human beings.  Look at it another way.  We were all once innocent babies, who needed and deserved the best care in the world.  For a million reasons things can go wrong, but we all still need and deserve care and compassion.  They’re not monsters, but babies.  That’s my way of looking at it anyway.

I don’t write this post today because it’s a good topic to debate, but rather because it is something weighing very heavily on my mind right now… because of my personal experience.  I can’t quite get my head around there being no hope for someone’s mental health, mostly because I had to cling onto my own hope (and others’ hope for me) for so long (and still).  Maybe someone will tell me it doesn’t matter because the person probably isn’t motivated toward treatment anyway, but we all have families.  While they might not always be perfect families, at least some of them would want hope for us.  Some of them would not want us to be at ‘peril on the sea’.  And I just can’t accept that these people should simply be left at peril.

“There, but for the grace of God, go I.”

― John Bradford (1510–1555)

“It is often in the darkest skies that we see the brightest stars.” 

― Richard Evans

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, Mindis 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

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.

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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)

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

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.

Still Standing Up To Stigma

Stand up for Mental Health

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

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.

A Bit Mental (Lilo The Waikato)

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, N...

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

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

Just Like Me

It’s been a busy week for the news media.  Wow, I guess they’ve all earned their negotiated salaries, although I do wish they would be paid somehow on the basis of what truth they spread.  Social media has also been busy.  Often partly a response to the news media, sometimes spread what they’ve called their own ‘truth’ and sometimes simply spreading lies (like the news), or popular opinion.

It’s made me pretty sad.  Sometimes it’s made me cry, that they can get away with saying the things the do, let alone convincing a somewhat gullible public that they are right.  Other times I took my own advice (Step Away From Your Screen) and literally stepped away from my computer, my television and my phone.  I had to do that to save my mental health because the whirlwind of information (true or otherwise) has wanted to wrap me up in it.  At times I wanted to fight some battles (because that’s who I am) but mostly I took my advice, backed off and watched with sadness.

Image credit: Chenspec/Wikipedia.com

During this week a lot of people have died in this world as a direct result of violence. There are the many who have made the news media, but there are also many more that we never hear about, yet their death’s are just as tragic.

The obvious victims are the 27 children and adults who were shot in the Sandy Hook Elementary School in Connecticut.  A tragic loss of so many lives that were mostly just beginning.

For a moment I want to consider two other deaths I have been aware of this week.  One is the 28th person to die at Sandy Hook, the shooter himself who turned the gun on himself.  Another tragic death I heard about this week was a man in England who was murdered in his own home. The details aren’t really important to what I am thinking, apart from to say that it appears his death was some type of vigilante pay back for a crime this man had recently been accused of having carried out.

In the case of both these men, the news media and the social media have played a part in spreading accusations and generalisations.  One man we have heard a lot about, the other you probably haven’t heard about.  What hasn’t been given is the truth.  We don’t know what is real and what is simply hearsay.

What I do know is that both of these men were just like me, in some ways.  They weren’t so different.  They had blood flowing through their veins. Like me they needed love, affection and acceptance.  At some point they had both probably been hurt badly, just like me.  These men were human beings, just like me, who it appeared that for some reason, everything went askew.

Maybe it was mental illness, maybe it was a developmental disorder.  Maybe too, they had some degree of evil (whatever that means) in them to drive them to the things they are said to have done.  Those things haven’t been clarified, yet the world has been quick to condemn.  Of the Connecticut young man I have seen a number of people describe him as ‘not human’.

That’s what leaves me sad.  I’m not condoning the actions of either of these men.  It was all wrong, and terribly devastating, particularly for those who lost family members and friends.

But these men were human, just like me.  And somewhere in spite of the horror of what has been happening, someone is no doubt grieving for them too.

I believe that these men were victims too.  I know that might be an unpopular stance to take, and I have no problem with people disagreeing with what I write (as long as I don’t get abused for an opinion).

Once, a number of years ago, both men were little boys and sometimes I find it helpful to think about them as when they were innocent children.  Again, because of the tragic death of 20 children last week it’s even hard to look at one of these men that way.  It just helps me to realise that while something has gone terrible wrong, these men were once just like you and me.

Yesterday I was at a barbeque (it’s summer here) which was a Christmas party for a group of people I know.  At one point I was sitting at a table with a lovely young man who I don’t know very well.  I’ve only met him a couple of times but what I do know is that he has Asperger’s Syndrome (a condition that has been subject to much media scrutiny this week).

It occurred to me while I was sitting eating my lunch with him, that it must be pretty difficult for him this week.  I know what it’s like to be looked down upon because I have a mental illness.  This young man doesn’t even have a mental illness (that I know of) yet the media have been putting him and other sufferers of Asperger’s in a group and saying we have to be careful of these people.  Apparently they might do ‘what Adam Lanza did’.

This man I was sitting with was, again, just like me.  He doesn’t deserve to be judged just because he has a disorder that makes him a little different from me.  Like me, he was enjoying having a drink, eating fresh berries and getting silly ‘Secret Santa’ gifts.  He had less to say for himself than most people on the group but that was the only noticeable difference.  He was, like me, having a good time.

Let me be very clear.  I’m not saying that horrific crimes committed against innocent people are acceptable.  They’re not.  It’s a terrible tragedy what has happened this week.  But we can’t afford to be looking at these people and thinking they are somehow different to us.  I’m not qualified to say why they might have done what they did.  I do have views on things that need to be done in society to prevent this from happening again, but those aren’t important right now.

What is important to me is that all the people who died this week (somewhere in the world) as a result of violence are human like me.  Someone loved them.  And to me, that puts a slightly different spin on things.

“The great gift of human beings is that we have the power of empathy,  we can all sense a mysterious connection
to each other.”

~  Meryl Streep

“Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have
been all of these.” 

―    Siddhārtha Gautama

Self-Stigma… Am I My Own Worst Enemy?

A discussion with someone recently about the stigma of mental illness as I have personally experienced it, has led me to do some soul searching.   I think both of us eventually came to the same conclusion… that perhaps self-stigma has been the biggest issue for me.  That’s not to say that I haven’t suffered at the hands of the cultural distaste of anything  related to mental illness, or that institutional stigma hasn’t affected me.  There have been times when social stigma has hurt, and often the result has been damaged, if not ended relationships.  But I realise that I have consistently applied self-stigma to myself for as long as I have had a mental illness, actually probably longer and that may have prevented me from getting the help I needed earlier.

The Mental Health Foundation of New Zealand, in their document Fighting Shadows suggest that self, or internalized stigma is:

“…internalised feelings of guilt, shame, inferiority, and the wish for secrecy experienced by those who live with a mental illness…  Self-stigma is a belief in negative stereotypes about a group to which one belongs and the application of those beliefs to oneself, thereby undermining one’s self-efficacy.” 

(Watson and Corrigan, 2001)

My guess is that what this means is that I internally hold negative ideas about mental illness, which I apply to myself (and that if I was applying those ideas to others then it would be social stigma).  That’s the understanding I’m going to use for now, and I have to say I feel less than comfortable with this thought.  Regular readers know that I have discussed the issue of stigma regularly.  It is something that I feel very strongly about, and wanting to fight it, is the reason behind a lot of the things I do. 

What I need to understand is why I have those stereotypes and why I apply them to myself.  I don’t pretend to think I’m going to satisfactorily answer that for myself here, but it’s a good place to start. 

My mother always used to tell me that I was my own worst enemy.  I’m not sure exactly what she meant by that, as Mum and I have never been known to have the sort of conversations that might see that answered.  Reality was more that the statement was made and that was the end of the conversation.  No doubt both of us were contributors to that.

I can remember when I was first diagnosed with depression, one of my most common thoughts was:

“I can accept anyone else having depression

but I can’t accept it in myself.”

Somehow I thought I was immune.  It would never happen to me.  I was 28 at the time and right through my life I had been surrounded by people with mental illnesses.  A lot of that exposure came through my father’s job which extended to having church people in and out of our home.  At high school, I was friends with a girl who had Anorexia.  We were never close, but she was the only person I was aware of in a school of one thousand girls who had a mental illness.  No doubt there were others, but it wasn’t something ever discussed.

When I left school I went straight into a job where I was working closely with a lot of people with mental illness and addiction issues.  Actually I gained a reputation in the office for being one of the few staff who could handle the particularly difficult clients, and so I was often assigned clients that no one else wanted to handle.  I enjoyed working with these people, and other staff couldn’t quite understand that.

Then I got to 28 and discovered I was sitting in a psychiatrist’s office talking about my failing mental health.  Straightaway I could accept it for anyone else, but not for me.  Things like that didn’t happen to me.

I think that all these people with mental illnesses, who surrounded me from a young age, were also a step removed from me.  They weren’t my family, and they weren’t my personal friends.  Mostly they were clients of my father’s or later, my own clients.  It’s almost like it wasn’t personal so it couldn’t affect me personally.  By that time I had a number of friends who had mental illnesses, and again that was perfectly okay.  I could accept their illness and often did a lot to support them.  But that was them, not me.

Why was it okay for them,

but not for me?

At this point I admit that I am guessing.  I don’t understand why I set one rule for others but another for myself.  Why could I have compassion for others, but be angry at myself for what I see as weakness?

What springs to mind is the first person whose mental illness had a direct effect on my wellbeing.  I was only 14 when I became the target of a stalker who had schizophrenia.  He was one of my father’s clients.  Dad would welcome him to our home because he wanted to help the guy.  The problem was that my father didn’t realise what danger he was putting me in.  When I left home at 18, the man followed me, as he did every time I shifted trying to keep one step ahead of him for the next 14 years.

I was literally afraid of this man.  He threatened me ,but never lay a hand on me.  But the damage he did to my mind in that time, along with other things happening in my life, was huge.  Actually it was only nine months after I finally felt I was free from him (by shifting cities) that I was being diagnosed with my own mental illness.  I’m sure that’s not simply a coincidence.

The man was regularly in and out of the local psychiatric hospital because of his illness, usually because he had taken himself off his medication.  The times he was in hospital were the best times for me.  Sometimes I got phone calls or letters, but mostly I was free while he was behind a locked door.

It make senses to me then why the last thing I would want would be to be diagnosed myself, as I might end up in hospital with him.  Even figuratively a diagnosis would put me in the same camp as him.  If I was the same as him, then somehow I was in more danger.

The second thing that comes to mine is that on several occasions I tried to talk to his mental health workers, to help get them to help me be safe from him.  Actually each time I tried I had the Privacy Act quoted at me, and they wouldn’t even listen to me.  I didn’t want information about him.  I wanted them to know what he was doing.  But the mental health system was not interested in the harm he was causing me.  Again it would make sense why I wouldn’t want to diagnosed myself, because clearly (to me anyway) the system was not interested in helping or protecting me.

What you’ve just read is me thinking out loud.  Obviously there is no audio link with this post but I’ll leave you to imagine that I have been tossing ideas with you.  This self stigma hindered me from getting help from medical services but even when I began to accept that actually it was okay for me to have a mental illness, I perhaps unconsciously  used the stigma to make it hard for myself to get other types of help.  There was a lot of help at university for people with disabilities, including mental illness, but I struggled to seek it out because I didn’t look sick.  It was me that put that barrier up, no one else.

Considering self stigma is not an easy one.  I am a little embarrassed, but I wonder how many others might struggle, unknowingly even, with our own attitudes that prevent us getting the help and support we need.  It doesn’t take away the problem of the stigma we get from other sources, but I’m realising that I have to start with myself.  How can I expect others not to stigmatize me when I do it to myself?

Never forget that once upon a time, in an unguarded moment, you recognized yourself as a friend.” 

―    Elizabeth Gilbert