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)

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

Is This Significant?

Image courtesy of [Danilo Rizzuti] / FreeDigitalPhotos.net

Image courtesy of [Danilo Rizzuti] / FreeDigitalPhotos.net

I’ve been looking around the blogosphere and it seems that 200th post is significant, so let’s be significant today. I’m not entirely convinced that it is a point worth noting, after all it simply says I’ve pressed ‘publish’ 200 times. So what? If I’m honest, quantity has never been important to me. What matters to me is quality?

Every time I pressed ‘publish’ did I have something worth saying? I have absolutely no desire to simply meaninglessly fill your in-box, but am much more interested in knowing whether what I have to say each time I press ‘publish’ actually makes a difference.

So far, to my knowledge WordPress hasn’t found a way to let me know that.  I have numbers coming out of my screen at a rapid rate, and while WordPress also can convey ‘comments’ and ‘likes’ to me, they can’t actually tell me if I made a difference.  Did what I say, inspire or encourage?  What about all those who chose not to ‘like’ or ‘comment’?  I often don’t feel like doing either myself, but I know that a post can have made a difference without that.

If you’re looking for a great 200th post, this one, My 200th post from aliceatwonderland is great.  As usual with her work, I laughed my way through it, and I know I could not repeat, or even replicate her imagination.

Meanwhile I keep pondering.  Numbers have not meant a lot for me for a while now, and blogging is no different.  You see after years of thinking the size in an article of clothing meant the world, and the number which shows up on the scales is the most important thing that day, I know that numbers just don’t matter.  Numbers meant a lot when I had anorexia but now I know I’m better to ignore them and focus on something else.  Numbers are after all, completely relative.

The last time I stopped and thought about numbers here was when I wrote my 50th post, Lessons For Cate So Far…  It was useful for me to think about what I had learned from the blogosphere in the time I had been involved.  At this point, what is relevant to me is what I have learnt about myself as a blogger.  There’s a couple of things worth noting.

I’ve realised that advice is not the thing I’m interested in.  That is, I’m not blogging to give you advice.  And I’m not blogging to get advice.  I’m neither experienced, or trained enough to offer advice to anyone and therefore I would be insulting your intellect if I did.  There is, sadly, plenty of rubbish on the internet, blogosphere included.  That’s okay if that is what you want but I really don’t have any passion for adding to it.  All I want to do is share my experience and my opinion in a way that is hopefully helpful.  None of it is fact, or necessarily right or wrong.  If readers manage to draw their own conclusions from what I have written then I am a happy woman.

I admit too that I’m not even that interested in drawing advice.  That’s not why I share.  If you want to give me advice, fine but what I am more interested in hearing is about your reactions.  Again, there is nothing right or wrong.  You don’t have to agree with what I have said (I’m not used to that anyway), and actually I welcome constructive dialogue.  I won’t be upset if you disagree.

The other thing I have come to realise about myself as a blogger is that I am passionate about being careful with other people’s work and respecting the effort they have invested.  The amount of times that bloggers break copyright that is atrocious, and often it is probably because bloggers haven’t taken the time to find out the rules. Ignorance is not an excuse for breaking the law.

I’m not about to give a lesson on copyright except to say check it out from a reliable source.  Copyright is not only illegal, it is also a hard slap in the face to our fellow writers and artists.  It’s not difficult to respect those people enough to either not break copyright, and at least ask permission before we use their words or images.

I am not aware so far of anyone using my material in this way, and that’s not why I object to it.  Instead it is because I see it regularly on blogs I read, and have come to the conclusion for myself, that I will not follow blogs where I see them consistently break copyright.

Actually I don’t follow your blog to read what someone else says anyway.  I’m interested in what you have to say.  For the same reason I rarely chose to read re-blogs. And if I don’t stand up for the rights of other writers and artists, then I fail to be honest and fair.  I’m not telling you this in order to tell you what to do, but rather to explain my own choices.

“We have to dare to be ourselves, however frightening or strange that self may prove to be.” 

―    May Sarton

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Blog For Mental Health 2013

blogformentalhealth20131

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

Nothing More Lonely

Last night, it was Friday night in my part of the world, and by 8pm I was in bed wishing for sleep.  It had been a hard fibromyalgia day that started with fatigue after a Thursday with too much packed into it (when will I learn?).  That fatigue had progressed into pain as the day went on.  While I wanted to stay up later, I had simply had enough of pain, and being alone with it.  There is nothing more lonely than being in pain, alone.

I didn’t need anyone to save me from my pain.  That would have been nice but I knew it was never going to happen.  If they were willing to get me chilled water when I wanted it (I hate room temperature water) that would have been lovely, as getting up and struggling to the kitchen was growing in difficulty.  But actually I simply needed someone there who knew I was in pain.  And I needed to know that they knew I was in pain.

Image credit: FB/A Beautiful Mess Inside

Image credit: FB/A Beautiful Mess Inside

What I didn’t need is someone to tell me to “get over it“, or “it’s not that bad” or even “everything will be alright tomorrow“.  I, like probably most of us, have had those lines thrown at me in the past, and really, none of it helps.  In my moments (and longer) of pain I don’t need advice.  What I need is compassion and empathy.  The person who is able to be with me quietly, resisting the urge to throw me advice or platitudes is the person I want with me.

What I have been talking about so far is chronic physical pain.  For me last night, my muscles and joints ached and my skin felt like it was on fire.  The bedding resting on my skin was so uncomfortable that I ended up sleeping without it.  It’s standard fibro pain.  I seriously felt like no one in the world knew how much pain I as in, and how sick of it I was.  I felt very lonely.  I needed to know that someone else knew, even if they couldn’t remove it.

But this doesn’t just apply to physical pain.  It applies just as much to emotional and mental pain.  I spent years insisting that I wanted to be alone, but once I was, I couldn’t bear it.  Do you know that feeling?  Pushing people away, yet really wanting someone to hear and understand… without advice.

Many times in my life I have heard “you made your bed, now lie in it“.  Does that sound familiar?  It seems that I had made things as they were and I only had myself to blame.  Even if that were true, it doesn’t take away my need for care and empathy.

Regularly when I was depressed I believed that I couldn’t bear to be around people.  The worst thing was a room full of people, because I would believe that no one knew I was in pain and no one cared.  Sometimes I even needed the evidence of a physical scar so that perhaps someone would get the degree of pain I was in.  Actually I suspect that sometimes no one did understand or care, because so often people don’t stop to think how those around them feel.  But I would go home, and be alone, only to have never felt so alone in my life.

Of course I made that bed for myself too.  I convinced myself that I didn’t need anyone and I particularly didn’t need to be in a relationship with anyone.  I could even say convincingly that I was happy to be single.

Actually I think that I talked myself into that.  I convinced myself that I was better to let no one come near me.  When so-called  friends judged me once too many times, I convinced myself that I didn’t need them either.  All I believed I needed was my cat.  The good thing was that she would never hurt me, and if I didn’t let anyone else in, then neither would they.

I’ve changed.  I’m not so adamant of my ‘need’ for alone-ness.  What’s more I am now prepared to take a few risks in terms of letting people get near.  Maybe if I let the right people in, then I am not so alone when I am in pain.  I want to be connected to other human beings.

To have someone understand that I am in pain, either physically or mentally, now means the world to me.  It’s not that I need sympathy, and I know no one can remove my pain, but simply I am not as alone in the world when someone makes the effort to hear it, and when I let them.

“Few things a doctor does are more important than relieving pain. . . pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained.” 

―    Marcia Angell

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

Let The One Who Has Never Fallen

As often happens, I was going to write about something totally different today.  It will have to wait.  Why?  Because today, through another blog that I follow, I learnt of the suicide of a young woman.  She wasn’t someone I knew, but she was a fellow WordPress blogger.  For some reason, and perhaps because of the tragedy of a suicide leaving a grieving husband and child, I felt drawn to read the story told by one of her friends.

If you want to read it, the link is contained in the Related Articles below.  That said, it is a disturbing read.  I don’t feel comfortable going into much detail myself out of respect for someone I didn’t know.  It is her story, and that of her friends.  It’s not my story to tell.

That said, one of the things this young woman struggled with in recent days is the judgement of her readers.  It left her feeling like she didn’t have a place to tell her story anymore.

I guess it really made me think after a conversation I was part of earlier today about that very issue.  The tendency of us human beings to judge others.  No matter what religion you might follow, there are instructions that we do not judge other people.  The one I know best is

“Let the one who has never fallen,

throw the first stone”

In other words, s/he who has done no wrong, is the only one who can judge.

When I published my book, Infinite Sadness, I came under attack from a few who felt they could judge the things I had done and the decisions I had made.  I knew it was one of the risks I faced in telling my story, particularly under my own name.  I had already been judged by a few when those things I wrote about actually happened.  Because some people just want to think they are better than anyone else.

We’re not.  It doesn’t matter who we are, what we believe, or what we do… we don’t deserve to be judged ever.  A quote from the story I read hit me quite hard:

“Humanity is not perfect. We are people who screw-up. The worst of the worst come from us. However, the fact is, that the best of the best exists in us too. It is this that God sees. It is this that God understands.” (1.)

I’m not someone who chooses to talk about God, or any other figurehead of religion.  My beliefs in that respect are personal to me, and I don’t see the need to put them unnecessarily on others.  That said, I believe that ‘God’ can take all sorts of forms for different people, and that’s how I think about it in terms of what was written.

Whoever I choose to believe is ‘God’ has an understanding and acceptance of both my, and your goodness.  That’s what matters to me.  And it’s not my role to intrude on that and judge another’s good or bad.  It’s none of my business.

Maybe that’s a simplistic approach for some people but it’s not only about how I treat others, but how I hope others treat me.

This young woman who took her life a few days ago was judged by readers of her blog.  It actually blows my mind simply because I have never felt anything like that from readers in the time I have been blogging.  Being judged is something I often fear, but it’s never something I’ve experienced through my blog.  It’s more than sobering that the judgment she received stopped her in her tracks.  Writing was part of her healing process, but she lost that ability. It’s more than tragic,  it’s something for all of us to think about.  I am confident she was a flower, as much as any of us.

“Once in a golden hour,
I cast to earth a seed,
And up there grew a flower,
That others called a weed.”

―    Alfred Tennyson

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.

What My Doctor Won’t Tell Me

My doctor won’t tell me anything.  I think he has perfected the art, no doubt taught in medical school, of ‘keeping the patient in the dark’.  My guess is that they have a unit on this topic every year of medical school, and it is continually repeated throughout their career when they take off to tropical islands courtesy of drug companies.  Along with taking the Hippocratic Oath, I am coming to the belief that they also take, and renew annually, an oath to keep the patient in the dark.

My suspicion that this is an industry wide oath is because it’s not just my current doctor who does this.  My experience is that 95 per cent of doctors I have seen across my life (and I promise you I’ve seen more than my fair share) have been firmly committed to this way of working.

Information

Information (Photo credit: Wikipedia.com – heathbrandon)

Why would they do this?  Probably simply because it saves time.  They can push me out the door, while welcoming another patient in, all the while earning more dollars.  It makes sense…  for them.  It makes no sense for me, the patient.

I also believe it is about power.  Doctors like to be looked up to, seen as the one with all the answers.  It’s great for their egos and probably even helps them deal with the patients they lose along the way (through any number of means).  If my doctor keeps me in the dark, then I have to rely on him to act when necessary, and he loves that.  The problem though for me is that experience tells me that my doctor has far too many patients who rely on him, too little time, as well as perhaps not enough incentive to make sure I get the care I really need.

Nearly a year ago I was diagnosed with fibromyalgia.  It was my second big diagnosis within 18 months, and yet again I had been sent off to a specialist (this time a rheumatologist) to confirm the general practitioner’s (GP) suspicions.  After a rather large amount of money had exchanged hands, and a very thorough (well, what seemed thorough to me, but how would I really know?) assessment I was told I had fibromyalgia.  She then dumped the news on me that she couldn’t offer me any medication for this condition and that I would just have to get used to it (it was said a little more kindly than that but not much).  And that was the end of my appointment.

Silly me.  I walked back to the reception desk and when the receptionist handed me my receipt, I half expected her to hand me a ‘Welcome to Fibromyalgia’ pack.  You know how when we join a new bank, for example, we get a brochure explaining the services of the bank, details of opening hours, the web site addresses we will need to access the internet banking?  Wouldn’t it be great if doctors provided us with information?  It would suit my information junkie tendencies perfectly.

Being an information junkie runs in my family, and my skills aren’t nearly as well honed as some other family members, but I am one of those who immediately needs to look for information when I am faced with a new issue, problem or just a new subject I get interested in.  I need to read all I can about it.  I search the internet, I look for books, I want all the information I can possibly get my hands on.  For a medical matter I want my doctor to hand over all the information s/he has.

Unfortunately this is where I come to a fast halt.  I get a “let’s just see how it goes“.  I hate that.  I want to know ahead of time how it might go.  I want to know what problems I might come up against.  I even want to know what I can do to avoid those problems, and if I can’t avoid them I want to know what to do.  Sadly doctors never see it my way.  And that means relying solely on what information I can scramble together from sometimes dubious sources.

You see I want to be empowered as a patient.  I want to be prepared.  I want to feel like I can have some control over what is happening to me.  But there seem to be very few doctors, both in general medicine and mental health, who are prepared to help me do it.  I know doctors struggle for time, but I also know that when I know and understand what is happening to my body, then I need my doctor less.  A win-win for both of us.

One of the very real difficulties with a condition like fibro is that everyone’s experience is different.  No one can give me a list of exact symptoms I might face.  And so I don’t get told anything.  Everything comes as a surprise.  Everything that happens to my body, I have to wonder why or what is going on here, and with more than one condition I am always left wondering which one is causing the problem.

Over the past few weeks I have noticed that I have put on a little weight.  Not a lot, but to the extent that my clothes just feel tighter.  I admit that weight gain is a really hard issue for someone who is a recovered anorexic, so I have been quietly starting to panic because there’s one thing I know… I’m not eating any more or less than I was.  All the old fears come into play of being out of control and the need to take back that control by restricting.  I’m not about to do that, but it is a very real war in my head that any recovered anorexic will tell you.

With one of my conditions (Graves’ Disease) I am meant to panic and get straight to a doctor if I have a sudden weight loss.  With the other I had no idea whether it was even an issue.  So information junkie Cate had to start searching again, and found that unexpected weight loss or gain can be an issue for people with fibromyalgia.

For a moment there I could breathe again.  Perhaps that’s the explanation, then again maybe it’s not.  I wouldn’t know because my doctor hasn’t helped me get the necessary information I need about this illness.  Maybe it’s a peace of mind thing, but it would have helped me considerably to know this was a possibility.  Actually it would also explain why last year I had been losing weight without any adjustment to my diet or lifestyle.  I’m just hoping the scale tips shortly and I start losing again.

I know these are not life and death issues I need help from my doctor, but I do feel like fibro is a runaway train riding close to out of control.  The place I get my information from tends to be from other sufferers, and that’s great to have that but it feels like fibro is just happening and I have no say about it.  Not being able to access medication makes it harder.  It seems like I just have to let it happen to me.

I didn’t like it when I had to let depression happen to me for so long, and I don’t like this feeling that fibro has completely taken over my life.  I might have fibro, but fibro is not me.  I need to find a way of taking back the reins and I’d very much appreciate my doctor coming on board with this.

Except I think I’m dreaming.  I don’t think he wants me to be empowered.

“My own sex, I hope, will excuse me, if I treat them like rational creatures, instead of flattering their fascinating graces, and viewing them as if they were in a state of perpetual childhood, unable to stand alone.” 

―    Mary Wollstonecraft,    A Vindication of the Rights of Woman

What’s Happening To Her?

Image courtesy of  href="http://www.freedigitalphotos.net" target="_blank">FreeDigitalPhotos.net

Image courtesy of FreeDigitalPhotos.net

Yesterday, after a particularly difficult time in therapy, I was thinking about my family who had to stand by and watch me try to self destruct over and over again, as the years went by, and I struggled with mental illness.  At the time the relationships in my family were a bit different from they are today.  In addition to that my father, who was perhaps my staunchest supporter has died, and there is a whole new generation of nieces and nephews, who actually are still too young to know what pain my family went through.  I know that it is not just my pain, they bore theirs too.

I also know that while I pushed many friends away, there were a few who also had to stand by and watch me in my determination to self destruct. I admit I don’t really know what they went through.  I have been in the same situation of watching others go through this journey, but I have always had my own experiences as a kind of backdrop to understanding what was happening.

This morning a friend posted some music on Facebook. Often I pass by other people’s music post but the title caught my mind and I chose to listen (and watch) this time.  It’s amazing.  It is from Ashley Jordan

I was fading away… right in front of my family and friends.  They had no idea how to make a difference, and I know that I made it difficult for them because I was so intent on destroying myself that I didn’t want them to get close.

My fading away took the course of a physical fading as I starved myself through Anorexia.  But I was also fading away as the heavy doses of medication took from them, who I was.  I was different to the person they had known and loved.  They didn’t know how to be with this new, angry but desolate me.

As I repeatedly tried to kill myself, they were left wondering just how long it would be before I achieved my goal.  I know this because one of them had the balls to tell me that he wondered how much longer he would have a sister.  He even said in a letter that in some ways he wished I would achieve my goal…  and then at least my nightmare would be finished and there could be peace.

In addition to the anorexia, heavy medication and suicide attempts, my nightmare journey also consisted of constantly worsening self harm, reliance on drinking and over-medicating to get me through the day… or the night, not to mention the repeated rounds of Electro Convulsive Therapy (ECT).  The ECT also saw their sister, daughter, grand-daughter, wife, friend fading away as my memory was badly affected and to some extent just never returned.

Cate was fading before their eyes, and there wasn’t a damn thing they could do about it.  Those that could, poured money into treatment but it produced no results.  Those who I allowed, tried to let me know they loved me.  But then I was pretty determined to not let anyone near, and I had a husband who enabled that to be in his thinking that he was doing the right thing.  He kept them away.

And as for the husband, now an ex, I have little idea what was going through his mind.  While he wasn’t the right person for me, he still was an essentially good person who had somehow landed himself in the situation of loving someone who was fading away fast.

There is a chapter in my book, Infinite Sadness, about the role that family and friends took.  Of course it is written from my perspective, and not theirs.  Their perspective is hard for me to even imagine, but I know it had to have been rough.

“…It is strange how when I most needed people I couldn’t bear to be with them.  I hid from many phone calls.  The answer phone and Dave proved very useful.  When people knocked on the door I hid and pretended to be out.  I couldn’t stand myself or my feelings and I couldn’t handle the thought of others seeing me like that and maybe agreeing with me. What if they couldn’t stand me either? I maintained that I was not lonely but rather just very alone.  There is a difference and being with people wasn’t going to help me.  Many times being with people left me feeling totally out of the real world.  I didn’t fit. I didn’t like what I saw of myself and I didn’t want others to reject what I knew they would see….”

“…So why did I push them away?  Part of it was what I didn’t like about myself, that they might see if I gave them a chance.  But more so it was because I didn’t think they could understand.  Perhaps too, at times, I felt it was partly their fault that I was suffering so much.  Of course it wasn’t their fault.  There were definitely things about my life growing up with my family that were now affecting me, but equally there were things that had happened since I had become an adult.  I couldn’t blame my family for those things – but I did.  For a while everything was their fault.  I didn’t want to see them or hear from them.  Dave, thinking he was doing the right thing, made this easy….”

(p. 174,5 Infinite Sadness, 2009)

So why am I choosing to write, and cry, my way through this today?  Because when I listened to that song I heard, and thought about my family and what perhaps they felt as they watched me self destruct.  I know for me I constantly thought they didn’t get it.  The truth is that they probably didn’t.  How could they?  They had never faced this before and they were seeing me fade (mentally and physically) before their eyes.  To watch someone you love do that must be devastating.

When I was caught in that nightmare there was little time or even inclination to stop and think how what was happening to me, was affecting those around me.  I will never know how some of it affected people, but I know now that I am not the only person who suffered as a result of my mental illness.  Somehow for me, it is important now to be able to look beyond myself a bit.

I don’t have the perfect family.  Not at all.  Aside all of this, most of us have been through some very traumatic experiences in the past couple of years, what with earthquakes, deaths, health issues and more which have taken their toll on us.  We’re like any other family and some of my family actually had roles in the causes of my illness.  My friends are just like anyone else’s friends.  Human, with feelings and limits.

The good news is that I came back from fading away.  I know plenty of families don’t get their loved one back.  We are all different now, and the scars are clear, but I guess what matters is that we are here.

It’s worth thinking about sometime.  How it might be for our friends and families to watch.  They are pretty much helpless and generally don’t, or won’t understand for their own reasons.  Writing this has made me cry a lot today, because there have been losses.  Isn’t it amazing how a random piece of music (and video) can take our thinking down tracks we weren’t expecting?

And on a slightly lighter note…

“If you cannot get rid of the family skeleton, you may as well make it dance.” 

―    George Bernard Shaw,    Immaturity

Disturbing

Yesterday, I couldn’t take social media anymore, so I took a break.  Perhaps my poor state of physical health contributed, but I’d just had enough.  I made my post here, and then turned off my computer and phone.

Why?  Because what I was seeing was jokes at other people’s expense and  terrible stories of the physical and emotional suffering that a lot of people in our world are experiencing on a daily basis.  And people forgetting that there is another human being on the other end of that social media tool.  Someone who feels pain just like me.  Some people just attack others with no regard for another, and when I’ve seen too much of it, I know it’s time for a break.  I refuse to become part of that world.

Image courtesy of [image creator: M - Pics] / FreeDigitalPhotos.net

Image courtesy of [image creator: M - Pics] / FreeDigitalPhotos.net

We’ve all seen the three monkeys (yes, I know these are chimps), and maybe seen the internet-tailored one with four monkeys.  I wasn’t able to easily find a picture that I could legally use here, so you’ll have to settle for the words:

Monkeys SEE no evil

Monkeys HEAR no evil

Monkeys SPEAK no evil

Monkeys POST no evil

Wouldn’t it be great if social media were governed by such rules?  Am I spoiling the fun?  Maybe for some people, but for others we would be sparing the hurt.

Today, after my day off yesterday, I was greeted this morning with this, as the first post I read:

“We have lost over 40 kids to suicide since the beginning of this year!! When are we going to WAKE UP and do something about what we teach our children?? Why are we allowing violent and demeaning programming in our homes?? When are we going to get these kids some meaningful help??? MAKES ME SICK.”

That’s 40 teenagers lost to suicide, through apparent bullying, in 11 days.  No doubt the number has climbed since then, and more sons and daughters, brothers and sisters, and friends and classmates have been lost.

I don’t have the details, but what I had in front of me was enough to put me off my breakfast, and because I knew that some of the bullying that would have taken place would have been in the form of cyber-bullying, I was again put off social media.  It was only a day ago that I wrote of social media being used to encourage teens to self harm ( see Like Bees To A Honey Pot).  It seems that every day I become more aware of the harm that is being done, and I hate it.

To find out some more I went searching for blogs about this topic and found one that distressed me further.  It was the list of ‘recent posts’ that got me.  We all have one on our blog, but not quite like this.  Each post listed was another teen known to the blogger who had committed suicide.  This blog is dedicated to making a stand about teen suicide by remembering each lost teen.  He says:

“Unless we really know the full impact, this crisis will continue to treated as a non-issue.”

This is about one part of the United States, but that made me think about how many more teen suicides there have been in the world in that 11 days.  Much of the reporting of teen suicides is very restricted and so it’s difficult, if impossible, to know the full extent but the one thing I know is that there is a lot of people hurting out there.

This is my point.  I know that there is a lot of good that comes from people working tirelessly, and usually unpaid, to support people through social media.  I also know that a lot of people (both young and old) feel less isolated because of the connections that they have through social media.  There is also a lot of good information sharing that goes on.  All these things are great.  But they get neutralized, in a way, by the harm that is generated through social media.

There has to be a better way than what we’re doing now.  We can’t afford to be losing teens (and adults) at the rate we are.  Maybe I’m being idealistic again, but society seems to have this idea that someone is free to say whatever they want on social media.  To hell with the consequences.  Society forgets that there are human beings, with real feelings, worries and insecurities on the other end of the computer screen.

My parents had that popular Christian saying of “What Would Jesus Do?” (WWJD) as something that guided them in what they said and did.  I know a lot of people still operate by that, and if that fits with your spiritual beliefs then that is great.  It doesn’t work for me personally, but what does work for me is:

What If It Was Me?

What if it was me on the other end of what I am about to post?  How would I feel to be on the receiving end of that?  If we truly answered that question, wouldn’t it change how we post?  I guess it is just another way of saying ‘treat others how you want to be treated yourself.’  It’s easy really.

You know I was really lucky.  The circumstances of my high schooling were such that I could have been in for a really hard time with bullying, but it never happened.  I was bullied briefly at primary school (because my Dad was the local preacher!) and I struggled with that for a while, but really I was lucky to get off lightly and to have the support around me when I needed it.

What I’m learning is that so many kids don’t have that support.  So many kids don’t have the love and the belief in themselves to get through it.  Social media is great in terms of the support so many groups and pages are giving, but I’m sure we can do better.  The good stuff is unfortunately not the stuff that social media is known for.  It’s the bad stuff that is what we hear about.

And don’t think this is just about teenagers.  It’s not.  Through social media a lot of adults get hurt too.  It can be blatant bullying but it can be as simple as the joke you post.  Maybe it’s funny to you, but what about for those whom it hurts?  Is it really necessary to have your laugh at the expense of someone else?  Again, what if it was you?

“Do you ever feel like breaking down?
Do you ever feel out of place?
Like somehow you just don’t belong
And no one understands you
Do you ever wanna run away?
Do you lock yourself in your room?
With the radio on turned up so loud
That no one hears you screaming

No you don’t know what it’s like
When nothing feels all right
You don’t know what it’s like
To be like me

To be hurt
To feel lost
To be left out in the dark
To be kicked when you’re down
To feel like you’ve been pushed around
To be on the edge of breaking down
And no one’s there to save you
No you don’t know what it’s like
Welcome to my life” 

―    Simple Plan

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