The Lessons of 2018

TW: depression, ableism, general unhappy stuff

2018 was a challenging and scary year.  I once again defied my doctor by seeking a second opinion on whether further surgery was going to help, and then going for it.  I left the organisation I’d worked at for five years.  I adopted a dog and a cat.  I endured massive amounts of pain and dealt with debilitating medication-induced depression.  I also learned some things.

 

1)  The world forgets the sick and disabled

Not the most cheerful starter, I’ll admit.  It’s true, though.  Healthy people (and I’m sure I was guilty of this prior to really suffering from endo) are massively prone to making sweeping statements that reveal that they simply do not factor in the sick and disabled.  For example, “everyone should be able to change a tyre.”  “Saying things are too expensive is just an excuse.”  “There’s no reason not to do this thing.”  They speak from the perspective of a totally healthy person and totally forget that actually, disability and illness are perfectly valid reasons why people can’t do the things they are talking about.  Whether they mean to or not, it is really exclusionary language and it leaves a lot of disabled people sitting there thinking, “What about me?  Why don’t I factor in here at all?”  It’s a really isolating feeling.  It makes you think that the world does not care.  We’re an after-thought at best.

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Image description: a hand pressed up against glass, touching its own reflection.  

 

2)  Some people actively hate the sick and disabled

It’s an attitude I honestly thought had gone the way of the third Reich, but there are real life people existing today that think disabled people are a drain on society, contribute nothing, and therefore have forfeited any right to assistance, and, on occasion, existence.  It was shocking and horrifying for me to learn and I’m a bit ashamed I didn’t understand it fully until last year.

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Image description: Scrabble tiles that spell out “Hi haters”

 

3)  Spoon theory is so applicable

I’ve previously written about spoon theory, and it honestly is such a useful way to describe how I navigate a day.  I became particularly aware of it over Christmas.  We went to stay with my husband’s family in Adelaide, and there were a lot of people there.  I was tired from the drive (it’s at least 12 hours from where we live in the east), my pain levels were quite high, it was hot, and the noise and pressure to socialise just wore my spoons down before I’d really done anything at all.  I felt terrible, because my in-laws were so generous and hospitable, and I ended up spending a good chunk of Christmas Day in bed because it was all I could cope with.  I was spoonless.  Without spoons.  Physically, emotionally and intellectually completely drained.

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Image description: a row of rainbow spoons, ranging from pink to yellow to green to blue, in bubbly liquid

 

4) You have to make the most of the good times

If I have a good day, I need to grab it with both hands and exploit it for all its worth.  That’s the day I need to text my friends and ask if they are free after work.  It’s the day I need to go for a run, clean the house, shop for groceries, walk the dog and cook for the week ahead.  Those days are limited and precious and you never know when they will stop happening, so you have to carpe the heck out of that diem.

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Image description: a cheerful toy sheep next to an insulated coffee mug with a blue check pattern that says, “today is gonna be a good day”

On the flip side, of course…

 

5) Life as a spoonie is a gigantic series of compromises and gambles

If I do too much on a good day, I risk guaranteeing that my next day will be bad.  On the other hand, there’s no guarantee that it won’t be bad anyway, so maybe I should just go for it.  On the other other hand, tomorrow I do have this thing I’m supposed to do so perhaps I should be extra careful.

It’s a similar story with medication.  The mirena is jam-packed with wonderful progesterone that should dramatically slow the growth of my endometriosis.  However, it now turns out that it could be responsible for a whole bunch of my pain.  Meanwhile, my Zoladex definitely reduces my pain but menopause is not exactly a party, and adjusting to it is seriously rough.

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Image description: Five red translucent dice with white spots and two smalls stacks of grey and white poker chips

 

6) A doctor you can work with is worth their weight in gold

I have seen four specialists since my initial diagnosis in 2016.  The first one performed the surgery that sent my endo spiralling downhill.  The second refused to believe that I could possibly have endo in me four months after my initial surgery and seemed like he didn’t believe my pain because he couldn’t provide a reason for it.  The third was great for a while but it felt like, after the second surgery and sticking me full of progesterone devices, that he kind of lost interest and was a bit annoyed that I wanted more relief than I was experiencing.  When I met Dr Edi-Osagie, I finally felt like I had found a doctor who listened and genuinely cared.  The difference that makes is literally making me tear up just thinking about it.  It matters so much.

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Image description: a hand holding a stethoscope against the chest/tummy of a white teddy bear

 

7) Sometimes hard and scary decisions are necessary

Quitting my job was terrifying.  Committing to a third surgery that would cost a lot of money was terrifying.  Every time I take a new medication it is scary because I have such terrible trouble with side-effects.  The decisions we have to make can alter our lives and our bodies, sometimes irrevocably, and there are so many to make.  I’m scared every time, but I’ve got a lot better at taking the plunge because I know I have to.

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Image description: a grey wall with seven identical brown doors reflected in the shiny floor

 

8)  Depression is harder than you can possibly explain

To someone who has never suffered that overwhelming apathy and bleakness it can sound silly, like something you should just be able to pull yourself out of with a little bit of gumption.  You cannot.  It’s like trying to sit up when a giant is stepping on your back.  Even writing it out now I can’t actually convey what it feels like.

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Image description: a person in a black hoodie and blue jeans sitting against a blue wall holding a square piece of red paper over their face.  The paper has an unhappy face drawn on it.

 

9) You cannot overstate the importance of support

I actually can’t imagine what my life would look like if I didn’t have my husband and my parents.  Ok, I can, but I don’t want to, because I would be very poor, living in a pigsty if I hadn’t been evicted for not paying rent, not eating properly, and probably not having the strength to challenge my previous doctors when they started to give up on me.  I certainly wouldn’t have the wonderful life I have now – and it is still a wonderful life, even if the tone of this blog post may be making people question how I feel about it.

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Image description: A circle of six people’s hands, each hand holding the wrist of the next person.

 

10) You are stronger than you think

Novels and movies tend to romanticise suffering somewhat, and so you grow up thinking, “yeah, I’m tough, I could suffer.”  Then you do, and you realise that actually suffering really sucks and you can’t do it after all…but then you can.  Every day that you are still here is another day you’ve kept fighting.  I re-read the phrase, “while there’s life, there’s hope” today, and honestly, I have never appreciated that quote so much.  One day this particular illness may outstrip my capacity to live through it.  I don’t think it will, but it could.  But not today.  There’s hope.

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Image description: a plastic purple dinosaur (maybe a T-Rex?) on a pink background, because dinosaurs are hecking strong and so are we.

 

Did you discover anything new in 2018, either about you or about the world in general?  Let me know in the comments.

10 Tips for Zero-Waste Endometriosis

Yesterday I talked about veganism.  In it, I mentioned two things that I’m going to carry on with today – environmentalism, and terrible people.

We all know that the planet is important – it’s the only one we’ve got – and we’re going a fair way to destroying it.  We need serious changes, predominantly at national and industrial levels, to wind back the damage.  That’s why zero-waste living is a growing movement (and one that gels neatly with veganism).

Unfortunately, the zero-waste movement has its own share of people who are elitist, highly critical, and totally unaccepting of the fact that different people have different limitations and abilities.  I have literally seen one woman declare disabled people to be a waste of space because they don’t contribute but still generate waste.  It’s not welcoming for people like me who can’t do many of the things that are more eco-friendly on bad days, such as chopping vegetables rather than buying packaged, pre-chopped produce.  There’s a lot of challenges for us in a zero-waste life – buying in bulk in Australia is trendy rather than a norm, so it’s expensive and not feasible for us.  Dumpster diving is for fit folks who can spend their evening moseying around shopping centres.  Making tasty snacks from scratch is something we can’t always physically cope with.  Reusable toilet paper might not be up to our bowel explosions.

So, what are some positive changes that people with endometriosis can make that aren’t really physically demanding?

1) Swap tampons for menstrual cups and pads for cloth

If you can manage it, things like the Luna cup are a great alternative to tampons.  Made of flexible silicon, they are resuable, washable and come in different sizes.  You just insert them, then pop it out when you use the loo, rinse it, and reinsert.  It does have its downsides – if there is no sink handy, it is not a tidy process.  However, the women who wear them often cite them as being incredibly comfortable compared to tampons, and they are definitely less wasteful.  Sadly, these bad boys aren’t an option for me, as even tampons cause me bellyache.  Other women with endo may experience similar problems.

There are a couple of alternatives to pads, too.  Undies like Thinx are my preference, as I think reusable pads create more washing for us than we might need.  However, if reusable pads work for you, go for it.  The fact that they are a breathable natural fabric may also help reduce the incidence of thrush.

2) Swap normal cleaning products for vinegar, soda and other home-made alternatives

I love white vinegar for cleaning things.  Most of the time I find it more effective than ordinary surface sprays, particularly when paired up with baking soda.  I’m pretty sure I cleaned my first apartment’s bathroom almost exclusively with this combination, and it looked great.

Another good thing is that vinegar is easy to buy in bulk so there is less packaging, and you can get baking soda in cardboard from Woolworths.  I then store it in a sealed jar and recycle the box.

3) Take bags with you

When I do make it to the grocery shop rather than using Woolworths’ or Coles’ online options, it tends to be a planned trip anyway because I need to conserve my strength, get exactly what I need and leave ASAP.  That makes it easy to take my own resuable bags, despite recent furor to the contrary.  I like to leave a few in the car if I have unexpected energy after work, too.  You can even get tiny ones to fit in your handbag.

4) Grow it at home

I find gardening incredibly soothing, although doing it on a large scale is hard work physically.  However, you can grow plenty of things inside or in small spaces.  Herbs are typically the easiest, and it is so nice to have fresh herbs around rather than relying on packaged stuff.  It motivates me to cook and makes me feel like I’ve achieved even more than just cooking a meal.  Pick your favourite herb and see if you can grow it on your windowsill, balcony or garden.  If you are coping ok with that, easier fruits and vegetables might also be within your power.

5) Get a bidet

If you can afford it, a bidet is a little luxury that is also environmentally friendly.  You know those days when your bottom is just raw from cleaning up endless diarrhoea?  Imagine how much more soothing a gentle stream of warm water would be.  And you get to save the planet too.

6)   Buy second-hand

I mean, I do this because I can rarely afford clothes first-hand anymore, but even if you can afford to splurge, buying second-hand is a great way to keep clothes away from landfill.  Check facebook for a Buy Swap Sell group for your favourite brand.  There’s thriving marketplaces for Review, Cue, Alannah Hill, Kitten D’Amour, Pin-Up Girl Clothing, Portmans and a whole range of others.  Big designers attract big followings.

7) Have a handbag kit

The times you do go out, there are things you can do to make sure that you are being zero-waste on the go, if you have room in your handbag.  A zero-waste handbag could include any of:-

  1. A hanky instead of tissues;
  2. A cutlery roll (a metal or wooden fork, knife and spoon in a little fabric container so that you can avoid disposal takeaway cutlery);
  3. A Keep-Cup for your favourite beverage;
  4. A metal, bamboo or silicone straw, if you are a straw-user;
  5. A little reusable bag.

8) Rethink your skincare

There are a multitude of recipes for home-made face masks, cleansers and moisturisers out there using only ingredients from your pantry.  I haven’t gone that far, but I have introduced coconut oil as a make-up remover.  Very effective.  It’s also a nice little boost for the dry ends of my hair.

Consider a switch from bottled bodywash and hair products to bars, such as Lush or Ethique.  They don’t really take any more in the way of effort, they last for ages and they still smell great.

9) Recycle properly

It may be tedious but in Australia it doesn’t take that much effort to separate recyclables from actual waste.  Don’t chuck paper into landfill when it could be recycled into something new and shiny.  Don’t chuck stuff that is clearly rubbish into the recycling and ruin everyone’s day.  Just don’t be that person.

10) Encourage friends, sign petitions and raise awareness

Straws are a big hype right now and seem to be weirdly polarising.  Everyone has heard that straws are bad.  But do they know that the biggest pollutant in our oceans at the moment is discarded or broken fishing nets?  Without ever leaving your computer you can start or sign petitions, write letters to politicians and share clever memes on facebook to get people on board with fighting for systemic change that will have a far greater effect that any amount of swapping and recycling we can do on a personal level.  Be the change, but also ask other people to be too, including corporations and legislators.

 

Most of all, ignore the haters that say you aren’t good enough because you can’t swap your car for a bike and live in a tiny home growing organic kale.  You do what you can with what you have.  We are inherently involved with a medical system that generates vast quantities of waste because it has to for hygiene reasons.  You and I, endo-brethren, will likely never live those instagrammable zero-waste lives with beautiful pantries full of mason jars with beans in them.  But we can do our best, and everyone else can stick their criticism somewhere dark and smelly.

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THESE pantries, you know?

Do you have any zero-waste tips that I’ve missed?  What changes have you managed to make to help the planet without hurting yourself?  What do you say when people criticise you for “not doing enough”?

 

 

Dealing with Discrimination

I’ve mentioned previously that dealing with discrimination at work is a risk for anyone with a chronic illness.  In a way, I get it – what employer wants to pay for someone who can’t always perform at high capacity, and who will take far more sick days that your average employee?  On the other hand, it’s hard to be sympathetic when it’s your livelihood at stake.  Got to love capitalism.

But discrimination is a reality for people with chronic illness, so what can we do about it?

The law

I’m a lawyer, so the first thing I want to talk about in this post is the law.  However, I’m not an employment lawyer or a discrimination/human rights lawyer, so my understanding of the legislation is comparatively simplistic.  That may not be a bad thing, though, because I don’t want to bore you to tears.

The two key pieces of legislation that any endo-sufferer should know the names of are the Fair Work Act 2009 (Cth) and the Disability Discrimination Act 1992 (Cth).  That Cth in brackets means that it is Commonwealth legislation, so applies Australia-wide.  There may be additional Acts in your jurisdiction that supplement the framework created by these two.

The Fair Work Act (“FWA”) is basically an outline of all the rights and responsibilities of employers and employees.  Be wary – the protections for unfair dismissal, which are of most concern for us, don’t kick in until you’ve been in a position for 6 months, or 12 months if you work for a small business (less than 15 employees).  s385 of the FWA covers unfair dismissal.  Basically, it’s unfair if it is harsh, unjust or unreasonable.  It can also be unfair dismissal if you were told you were being made redundant, but you actually weren’t and the organisation was just looking for a sneaky way to fire you.

s340 of the FWA also protects you from an employer taking some sort of action against you, such as cutting pay or hours, because you exercised (or chose not to exercise) a workplace right, such as taking sick leave or complaining about another staff member.  s342 sets out a whole bunch of things that may be adverse actions in detail.  Under s343, employers also aren’t allowed to bully you into an action, and s344 prevents them from exerting undue pressure on you to change your working arrangements.

The FWA also has in-built anti-discrimination conditions.  s352 means they can’t discriminate against you for temporary absence due to illness or injury.  s351 means that they cannot take adverse action against you because of a disability.  HOWEVER, that does not protect you if you simply are not capable of meeting the requirements of the job.  If your endometriosis becomes so bad that you cannot carry out a key function of the job, changing your job or even firing you may not be illegal or discriminatory.

The Disability Discrimination Act (“DDA”) focuses on discrimination generally due to disability, including in areas such as education or access to premises.  It differentiates between direct discrimination (treating someone with a disability differently) and indirect discrimination (requiring someone with a disability to comply with a requirement that they cannot comply with where reasonable adjustments could be made to allow them to comply).

s15 of the DDA focuses on discrimination at work.  It makes it illegal to take the disability into account when determining if someone should have a job or what the conditions (pay, hours etc) of that job should be, to deny them access to training, promotions or transfers, to dismiss them, or to in any other way subject them to a detriment because of their disability.

Workplaces will generally also have their own enterprise agreements or awards that may also cover some of these things.

All of this raises the question, of course, of whether endometriosis is a disability.

Is Endometriosis a Disability?

Officially?  No.  The Department of Social Services does not list it as one for eligibility for a carer, but that list is very small anyway and you have extremely low day-to-day function to qualify.  It doesn’t appear that we qualify for the National Disability Advocacy Programme either.  I think there is some scope to argue that it may be a disability for the purposes of the National Disability Services, based on their definition of “conditions that are attributable to a physical cause or impact on the ability to perform physical activities”.  However, the sporadic and irregular nature of the flare-ups may disqualify many of us.  Those in constant, extreme pain are more likely to be able to mount a successful argument there.

However, those lists are about access to services.  The relevant legislation, the DDA, includes us.  s4 defines disability as including “the presence in the body of organisms causing disease or illness”.  So we are arguably protected from discrimination based on our endometriosis under that Act.  Importantly, the FWA doesn’t require a disability to activate most of its protections anyway -non-disabled people are protected from unfair dismissal too.  Given that these pieces of legislation are more important than the things mentioned above in terms of protecting us at work, I think that’s a win.  In the face of unemployment, it’s certainly an argument I’d give a whirl.

What can you do?

But what do you do if you experience discrimination at work?  It’s all very well for me to say, “That’s illegal!”, but how does that help you?  You have a few different avenues to go down in terms of seeking a remedy for the wrong that’s been done to you.

The first step is almost always to attempt to resolve the matter internally.  Speak to your boss, to HR, to your boss’ boss, whoever you need to to get things moving.

However, if a matter can’t be resolved internally, you have to take it elsewhere.

If you have been unfairly dismissed, you have an incredibly tight time limit to lodge an unfair dismissal application with the Fair Work Commission – just 21 days.  That’s real days, including weekends and holidays, not business days, so get it lodged ASAP.  The site has a load of detail on unfair dismissal and making the application here.  Even if you aren’t feeling too certain and want to wait for legal advice but can’t get in with a lawyer before the 21 days are up, just lodge it.  You can always amend it with a lawyer’s help later, so just give it your best shot and get it in.

If your application is upheld, you can get one of two things – compensation or reinstatement.  Most people don’t want unhappy jobs back and go with compensation.  The FWC can also force the former employer to give you a good reference so they can’t take revenge on you for winning.

If you haven’t been dismissed but are having other issues at work such as forced reduction of pay or hours, a change of position or being denied access to promotion, you can make a General Protections Application.  You can also make one of these if you are dismissed but it doesn’t amount to an unfair dismissal (although usually you’d just make the unfair dismissal application).  If the GP application is about dismissal, that tight 21 day limit still applies.  If it’s about other stuff, relax, you’ve got six years to lodge.  It’s always better to lodge sooner, though, where witnesses’ memories are fresh and the evidence is easily reached.  Here’s some great information sheets on GPs.

You can also make an application to the Human Rights Commission about workplace discrimination under the DDA.  You can either apply through the Australian HRC or your state or territory HRC.  The process is pretty similar for both – you have a conciliation, at which the HRC tries to get you to come to an agreement.  If you do, your employer may offer an apology, compensation, reinstatement or systemic changes in the workplace through training and education.  If you don’t…I find that the process tends to fizzle out a bit there, in my limited experience with clients with HRC complaints.  Generally I push people more towards the FWC.  That being said, there’s no harm in doing both.

Where can you get help?

Being a lawyer, I have a pretty good handle on what they charge, and they aren’t cheap.  I would always start by calling the Legal Aid helpline for your state or territory.  If they do employment law and you are eligible for their assistance, they will get you to fill out an application form to have a lawyer represent you.  Just beware – the assessment process for some states can take a very long time.  Last I heard from NSW, it was taking 6 weeks.  Smaller jurisdictions may be quicker.  The point is, if it is an unfair dismissal application, start it yourself and don’t wait for Legal Aid.

However, even if Legal Aid can’t represent you, they can at least give you some information over the phone to point you in the right direction.

TAS – 1300 366 611

VIC – 1300 792 387

NSW – 1300 888 529

ACT – 1300 654 314

QLD – 1300 651 188

NT – 1800 019 343

WA – 1300 650 579

SA – 1300 366 424

If they can’t assist you enough, call the Law Society for your state or territory.  They are obligated to give you a referral to a law firm.  Ask specifically for lawyers who do a no-win no-fee arrangement.  That way, if you aren’t successful, you won’t end up whacked with a big legal bill on top of no job.  If you do win, they’ll simply take their fee out of your compensation (if you are compensated).  It’s also worth asking the Law Society about pro bono help.  That’s where private law firms help you out for free, usually because you can’t afford them but still have a good case.  It’s a good option if you earn too much or have too many assets to qualify for ongoing help but can’t afford a lawyer (which is the vast majority of people, to be quite honest).

 

I hope that’s a not-too complicated summary of what the law says and what you can do if you experience discrimination at work because of your endometriosis.  Has anyone been through the legal system for something similar?  Have you been discriminated against because of your illness?