Friday, 30 March 2018

On Living With Pain

Pain is a tricky thing to talk about.  It is subjective - one person's 8 on the pain scale may be another person's 5.  Regardless of this, pain is something we should all take a little more seriously in terms of how we see our own health, and that of others.

Recently I got some gastro bug thing - which is fairly regular occurrence now I'm a parent of small humans.  It was bad enough that I felt super wiped out and had to take time off work.  But I thought it was just a regular tummy bug - I was glad it was just 'poos' and not 'poos and spews'.  A few days later, Murray caught my bug.  He also had to take time off work, but what was different for him was the pain.  He described it as the worst abdominal pain he'd ever experienced - like vices gripping specific areas of his stomach.  Because his pain differed so much from what I'd experienced I was concerned.  Maybe he didn't have what I had?  Maybe he had appendicitis?

       Me in Auckland hospital
for my second ectopic pregnancy


When we quickly realised this was not the case, we postulated theories as to why his pain was worse.  The most logical one we could come up with was that because I have regularly encountered abdominal pain (IBS, ectopic pregnancies, ovarian cysts, prolapse) my body may have acclimitised to pain - maybe his 9 on the pain scale is a 5 for me.

Current scientific research tells us that actually the opposite of this is true.  People who suffer from chronic pain conditions can become more sensitive to pain as the nervous system's function is altered by overuse.  This led me to wonder if, given my health history, my nervous system experiences pain as it's supposed to.  Has something that was once a 5 on my pain scale crept up to a 7?  And if it's supposed to be a 5 and not a 7, does that mean I'm worried over nothing?

A terrifying diagram of BV                   

I am pretty sure I'm not the only person to question whether the pain I experience is 'real'.  And I think the main reason I question this is not because of the newly learned information above, but because the medical profession rarely seems to take my ongoing pain seriously.   To give a recent example, since giving birth to Etta (nearly 5 years ago), sexual intercourse has been painful.  Initially, it was excruciating - penetrative sex was not really possible for the first six months post labour.  When I finally got brave enough to tell my GP he told me that bacterial vaginosis was the obvious cause of my pain.  Unsurprisingly*, his treatment plan for BV was only mildly helpful. But because he had physically examined me and found nothing obviously wrong previously, and because his manner made me doubt my pain was 'real', I was anxious about bringing it up again.

Since then, when asked about whether I needed birth control I have routinely said that because I am exhausted and it is painful, I don't have sex enough to justify using it.  On zero occasions has that elicited a worded response, or advice, from a single GP**.

My mother has suffered from debilitating abdominal pain for my entire living memory.  She had a full hysterectomy when she was younger than I am now in an effort to alleviate her pain, which later caused further complications.  When I told her I was writing this and asked for her input she said '..my abdominal pain*** is generally always ignored, not mentioned at all.  I have to bring it up and no-one has ever questioned me about it and my GP does not factor it in as a reason for me not being able to work but is happy to issue me prescriptions for pain relief every time I go.'

From the countless first-hand anecdotes, blog posts, articles and statistics I've read, our experiences are not unusual.  And as a common experience this does every person suffering from undiagnosed chronic pain a disservice.  Because aside from the obvious social outcomes**** of living with chronic pain, the physiological outcomes of chronic pain are massively under-rated.

Chronic pain affects almost every endocrine system in the body.  This can lead to changes in insulin glucocorticoid states.  What this means in regular speak is that ongoing pain changes how we metabolise lipids which affects the system that sends chemical messages through our bodies (via hormones).  This can lead to further health conditions including mental illness, muscle weakness, osteoporosis, diabetes and changes to metabolism - weight gain or loss.  Not only this, but recent studies have shown that chronic pain can lead to indolent hypertension and tachycardia, which in turn can lead to heart attacks and strokes. 

So living with chronic pain can (and does) literally kill people.

And, of course, pain is the body's way of telling us when something is wrong.  When you cut yourself chopping veges, you (usually) feel pain.  When you fall over trampolining and sprain your ankle, pain is one of the things that indicates the severity of your injury.  When you have appendicitis, sharp pain when pressure on the appendix is released indicates to medical professionals what their likely diagnosis is.

When we, or medical professionals, ignore that pain we can be missing the body's most obvious signal that something is wrong.  In most cases, pain is indicating a condition that is treatable, or at least, manageable.  In some cases, chronic pain is indicative of life threatening illnesses, like cancer.  In these cases, a late diagnosis could turn a treatable illness into a terminal prognosis.  When medical professionals ignore ongoing chronic pain they are ignoring the well-being of their patients.  Which seems pretty counter-intuitive to me.

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So why isn't pain taken more seriously?

I'm going to postulate some theories here.  The first theory is backed my quite a bit of research and is something I've written about before.  Most of the examples I have of medical professionals ignoring pain are ignoring womens pain.  Studies have shown that women's pain is taken less seriously than their male counterparts.  Why is this?


Sexism.  I don't think I need to say much more than that.  Those old stereotypes that men are strong and are not allowed to show weakness affect how they are treated when they do.  If a man actually goes to the Dr it may be assumed he must be probably very ill, if not dying.  Conversely, the stereotype of women being hysterical, emotional and oversensitive could lead professionals to downgrade their first hand accounts of what his happening to their bodies.  Until we can push these old fashioned notions out the back door, I doubt we're going to see much positive movement forward in terms of better support of and higher diagnostic rates of womens issues.

       'Easy for you to explain'...

My other theory - based on personal experience alone - is that Drs just do not have time to talk to their patients to diagnose anything other than simple ailments.  I think this is why many people turn to more holistic treatments for help.  At a GP's office, a standard appointment slot is 15 minutes.  At an osteopath, homeopath or acupuncturist the usual amount of time for initial consult is an hour.  I think this is why, in spite of copious trips to the Dr complaining of chronic exhaustion at age 20, it was a homeopath rather than a Dr that thought to test for Epstein Barr virus.  So while the GP signed off on the bloods (because obviously homeopaths can't), I would never have gotten a fairly simple medical diagnosis if it were not for the homeopath asking a bunch of questions no Drs had bothered asking previously.

Basically, I think women's health issues often fit into the 'too hard' basket.  And because they do not have time and work in what is often a high stress environment, GP's will often just prescribe the pill and paracetamol and send us home.  For many gynecological conditions symptoms are inconsistent and not always presenting at the time of the consult*****.  But in these instances, women with recurring pain should be referred on for scans, and if still unresolved to gynecologists or gastroenterologist or urologists until a solution can be reached.  I wonder if the reason this doesn't happen is because the public health system is so overloaded Drs are discouraged from making referrals?  I can't think of many other logical reasons why this would happen.

And my final theory is that women don't always tell their Drs all of their symptoms.  This sounds stupid, but it can be hard to talk about pain - especially in areas we are not exactly encouraged to talk about.  Many of us are raised by stoic or prudish or shy parents.  We are also raised within a society that can't even talk about vulva's accurately.  This, combined with GP's not always asking as many questions as they should, is not a great equation for women's health.  I mean, if you've met me, you'll know I'm fairly forward, relatively educated and big on women's rights.  I still freeze when confronted by most medical professionals because I immediately feel I am somehow less than - unimportant.


And this patronising Dr doesn't make it any easier to want to talk
about vaginal discharge

It feels to me, as though you need to have an education on how the health system works to get any currency out of our current public health system.  Either that, or have private medical insurance and an education in health yourself.  This seems massively unjust.  And while I think a large part of the problem is financial, an equal part is social.  We need to know our rights.  We need to understand our bodies.  We need to feel valued enough to give our pain a voice.

* Just want to say I have had BV countless times and I knew it was not the cause of such extreme pain, but he was the Dr, so I humored him.

** I did get a sombre knowing nod from a female GP once, but no further engagement on the topic.

*** Mum has suffered sharp pain in the same specific place in her abdomen since her final ectopic pregnancy (she had three).  It is very likely given her medical history, that this pain is due to scar tissue forming in that area that has hardened.  Regardless, it has never (her pain) been validated by medical professionals.  She has still not been referred to the the pain clinic, when both of her brothers [pre Auntie Shaz's transition] who also have chronic pain conditions, were sent not long after diagnosis.


**** I think these should be fairly apparent, but just in case they aren't some of these may include anxiety, depression, addiction issues, insomnia, inability to participate in regular social activities, inability to go to work, inability to exercise, inability to participate in a normal family life, inability to exercise proper self care plus a tonne of other things.  Just think about the level of function you have when you are in pain, then try and imagine how that looks when you suffer that much all the time.

***** They tell us to try and come in when pain is presenting, but with long wait times and Drs with busy schedules, this is not always feasible.  And not everyone can just drop everything they're doing to drive to the Drs and wait for an indeterminate amount of time to maybe get some help.  And for those of us who have been disappointed by Drs countless times, it is hard to believe that, even if we do get there on time, it will make any difference in terms of getting an answer.


Sunday, 4 March 2018

Bah Humbug to the Census

I've (clearly) had trouble blogging over the last month.

This is in part due to my new annual project, which involves writing one short story a month.  Sounds simple - but given that up until January I'd only written one short story since maybe 1996, it's a good challenge for me but it does use up my time and energy.

But I digress.

The main reason I've struggled to blog is that I've been too angry to blog.  The post that sits half finished in my draft pile is about racism in New Zealand.  I wanted to post it in a timely fashion to all the recent shitty events that occurred earlier in the year but it just wasn't possible.  Because I was too angry to post something heartfelt and rational that would be a good idea to put on the internet.

And I'm still angry.  About racism still, but about something else too.  The census.  And on this issue my ideas are simple and communicable.  So you get a post!

I usually get excited about the census.
This year it just made me sad and angry.

The census is carried out every five years and the reason we have a census is because (from the website):  

'Information from the census helps determine how billions of dollars of government funding is spent across New Zealand.  Because the information we collect is about everyone in New Zealand, it can be used to inform decisions and make plans about services and where they should be, such as hospitals, kōhanga reo, schools, roads, and public transport.'

So the census is quite an important thing to take part in.  Also, according to the Statistics Act of 1975 we have a legal obligation to complete our census forms.

And honestly, that's ok with me.  We need to know about the people who live here to get the right services to those who need them most.  And I understand that personal obligation comes into this equation.  But the level of obligation required for this years census seems unfair to the point I feel that it doesn't give all Kiwis an equal opportunity to be counted.

The Auckland Council has started using 'gender diverse' as an option for sex on its surveys.  Because I do a lot of surveys online, I have become quite accustomed to seeing 'gender diverse' as an option.  And while previous censuses have not had gender diverse as an option, I do not feel that is a good enough reason to continue ignoring that these people exist.  If the Auckland Council can change, why can't Statistics New Zealand change too?

Because while I don't personally identify as gender diverse* I know a number of wonderful folk that do.  So when I see a form that determines how billions of government dollars are spent, and that people I care about cannot even be accurately represented, I get pissed.  Because, yet again, they are:
a) rendered invisible and
b) forced to conform to an identity which is not their own 

And it's not as though they don't need representation.  Folk in LGBTQI communities need more support!  Bullying, suicide rates, mental illness, addiction, sexual abuse, having the shit kicked out of them by strangers - these are all issues that affect folk in our LGBTQI communities at much higher rates than in most other communities.  And yes, only a small subsection of this community will identify as 'gender diverse'.  Nevertheless, denying gender diverse or intersex folk the basic right of being represented accurately is just plain wrong.

As a comparison, for religion there is a text box option in  which you can fill with the appropriate faith system.  If they didn't want to include gender diverse as an option, why could they not have added 'other' with a text box like they did for religion?  The counter argument here is, of course, that in the 2001 census we managed to have the highest population per capita of Jedi (as a religion) in the world**  So it's easy to skew the census results - particularly in a small country like New Zealand.  Even so, religion still has a text box option - but sex still does not.

As it is, I found in the Q&A section of the census: My sex is not male or female.  How should I answer the sex question? The answer given is that you should call them on their 0800 number to discuss this.  Why would anyone, for whom their gender or gender identity may have made life difficult, want to call someone to discuss how to describe their gender?  This does not appear to be a well thought out solution.

And while friends have said please, request the paper form so you can voice your displeasure, I have heard that the forms are processed electronically.  So even if you do voice your displeasure on the paper form it's highly likely your voice will go unheard regardless.

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The even bigger issue I have with this census is that for the first time it is to be conducted almost entirely online.  I understand that this is a much simpler (and cheaper) method of data collection.  But it also makes a huge, and misguided assumption that all New Zealanders have equal access to internet.  People in poverty cannot easily access internet.  Elderly people that are not computer literate cannot easily use the internet.  People in remote rural areas often still cannot even get internet.

Lets talk about these groups individually. 

People In Poverty 

So they can't afford internet at home - they can just go to their library.  But can they though?  People in poverty can't afford lunch or jackets for their kids.  If they don't live close to a library, how are they going to scrape together bus-fare or petrol money to get to the library?  But they can just post off the form to get a form sent out.  Um, same issue here.  Unless there is a post office within the route they revolve their daily lives around, how will they get there to post the form?  And how will they get there again to send the forms back in?  For some this would be twice as hard as getting to the library!

And how easy is it to use the computers in libraries anyway?  I can tell you our local library (Waitakere) has a wait list for computer time most, if not all, of the time.  As Henderson is a low income area with a growing rate of homelessness (many of whom bed down close to the library), this is one of the only places many folk can access the internet for free.  When Daryl Evans chief executive of Māngere Budgeting Services Trust tried doing his census at his local library he said 'what could have taken 20 minutes ended up taking an hour and 15 minutes "because the site just kept shutting".'

Where will this man get his census form from?
     Are they going to put it in his trolley?


How many homeless people do you know that have a letterbox?  How will they get their codes in the first place?  This is not a new issue.  But it is an issue that affects a larger proportion of New Zealanders than it did during the last census.  Currently, almost 1% of our population is homeless.  We have the highest rates of homelessness in the OECD.  And even if they desperately want to be counted to get the representation they desperately need, how do they get their census codes? And how do people with no permanent abode fill out the 'dwelling' section?

This is what my Mum has to say about this years census:
'It felt more like a caring nation when the census people came to your home.  It felt that you mattered.  Now it feels like society can't wait til the old, poor and disabled die out and then they won't be such a bother.'  I don't think it's hard to understand why she thinks this way.

The Elderly 

This is my Grandma.  She was on Family Feud!
Not only is she tech savvy, but she has good

family support.  Not all folk her age do though.

If they live in residential care - truly, there probably won't be too much of an issue.  Their care provider will likely do it for them.  Because it's kinda the rules (I think?  It is with voting).  But for the independent elderly that may not be as computer savvy as you or I - this may be difficult.  The good thing is that many of them will follow the instructions on the form they got in the post and request the physical forms.  But some of them won't.  Probably a fair chunk will say fuck it!  Why should I, with my arthritic hip/sore knee/busy voluntary schedule, go out of my way to do something for the government that didn't even bother to send someone here for me to talk to!

And for those who get to the library to give it a go - how many will manage to fill out the census online?  With ever decreasing library budgets, it's not like their are a lot of librarians on the floor these days to help those struggling to work the interweb.  And every time they do help someone with their census form that's one less librarian able to do the job they are actually paid for.  I think if I were a librarian this would make me feel a bit stressed and angry.  Most librarians have post graduate qualifications and a lot to do already.  How did this become their responsibility?


Isolated Rural New Zealanders

If you live somewhere like the central suburbs of Auckland, it's easy forget that Fibre isn't everywhere. Actually, broadband isn't everywhere and believe it or not, there are even some areas of New Zealand that have no internet at all.  For people in rural areas, completing an online form is just not possible unless they drive for 45 minutes and stand in a certain position at the top of a hill.  Seriously.  I am sure some of you don't believe me.  I recommend you get your arse to a remote spot in Northland and try to watch a Youtube video.


Of course, again, they can request paper forms.  But, again, this is a two part mission.  People in isolated rural areas will live a long way from post boxes, and may only head into town as needed.  It's not like they can just 'pop by the post office after work' - many of them work where they live - on farms.  And for dairy farmers, it's not always that easy to 'just pop out' with heavy workloads and twice a day milking.


Rural living in New Zealand - doesn't always come with internet
(Mosquito bay, near where I grew up in South Head.  Wireless here,
but not on the Woodhill Forest side.



There are other groups for whom this will not be easy - new immigrants, refugees, those with literacy issues (which make up 1% of our population).  But this post is already long.  So I will stop here.

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So why do I care?  I care because these groups need representation by the census.  I care, because I am concerned that some of our most in-need communities will miss out on funding.  Manurewa local board chair Angela Dalton said that (paraphrased): council receives 90% of its funding based on population count.  Counties Manukau Health figures showed it treated 24,7000 more people than Stats NZ estimated were living in the area, a shortfall of $50,000 in their health budget.  And that was from a census that was not carried out solely online.  I expect that with further lack of representation, under-funding will drastically escalate after the 2018 census.

I do not care selflessly.  This isn't just because poverty and lack of internet affects people I know and love.  This is because in the future, this shortfall will directly impact on myself and my family.  It will impact by way of longer hospital waiting lists, crowded classrooms, increased homelessness and all the other lovely things that accompany lacks in public funding.  The longer we live with rising income inequality, the more this eats away at our society.  And I have to live in that society.  As do we all.

The solution?  I am not 100% sure.  But to start, they could send folk around to pop in and check that everyone has their code, understands what to do with it, and is able to use it.  These days in suburban areas they could even carry an ipad with wireless and help them complete their forms.  They could ensure that there were codes available, and iPads on loan at the Salvation Army and City Mission for a period of time to make it possible for those living on the street to take part in this census.  They could have a system in place where runners could pick up filled in forms in rural areas on a set day.

Yes, all these ideas cost money.  But there are much greater costs.  And our children will be paying them.
Our kids are accounted in this census, but many other kids just like ours, will not be.


* My relationship with gender is complicated.  I believe strongly that gender is a social construct, and by this proxy I probably identify as female (cos feminist, advocate for woman's issues and equal rights etc).  However, I feel a binary view of gender is limiting within our current society - in which case I'd probably prefer to be viewed as non-binary.  But with nice tits.

** While I was sorely tempted to join the many in achieving this phenomenon, I opted for 'rock n roll' as my religion that year.