Spoon Theory

Have you heard people say, “I just don’t have the spoons for this?” and wondered what it means?  Well, let me explain.

Spoon Theory is a way of explaining the effort of living with a chronic illness.  Created by Christine Miserandino during a meal in a restaurant, it goes like this:

Imagine that you start a day with a bunch of spoons.  These represent your total energy for the day.  Now, if you are a healthy person, that bunch is probably quite large.  If you have a chronic illness, it’s not going to be as big.

Now, take yourself through your day.  If you are healthy, getting up, getting dressed and getting to work might just take one spoon away from you.  Let’s say you started with 24.  Now you have 23.  If you have a chronic illness, each of these tasks might take one or two spoons.  Let’s say four total, because getting ready requires a number of smaller tasks.  If you started with just 12, now you’re down to 8, and you haven’t even started work yet.

Now let’s go through what would be a typical day for me.  Let’s say I’m at the court in the morning giving duty advice.  I have a three hour shift there.  That shift by itself costs me one spoon.  Add in an exceptionally difficult customer and that’s another spoon gone.  Let’s say it’s a particularly mad week and I’ve got to go into court for someone – another spoon.

So if that three-hour shift took 2 or 3 spoons, I’m down to just 5 or 6 left for the rest of the day.

I have my lunch break.  A healthy person might gain a spoon from some food and a break.  I don’t.  I need it just to maintain my spoons at their current level.

In the afternoon I see a client (another spoon), do some follow-up work from the morning (another spoon), deal with the inevitable crisis, because there is always one (another spoon), and review my files (another spoon).  That’s four spoons.  I’ve just got one or two left, and I still need to get home, eat, shower, feed the cat and go to bed.  If my husband is away, I’ve also got to walk the dog and cook myself dinner (he is my wonderful chef most nights).  As you can see, there aren’t enough spoons in the drawer for that.  That’s how I can end a day without having done much at all and still be totally and utterly wiped out.  I certainly can’t do what other people can do after work – go to a class or the gym, or spend time with friends.  If I do that I won’t have enough spoons left to do what needs to be done.

Now, some days I might have more spoons than others, and sometimes I’ll gain a spoon during the day if my pain suddenly vanishes or my meds kick in and give me a burst of energy.  On the other hand, if I forget my vitamins or suffer a flare-up, or even just have a cold, I’ll have even fewer spoons.  Right now I have the flu, a sinus infection and gastro (thank you, depressed immune system), so my spoon count is pretty low.

Some spoon-raising factors include good self care, such as getting a good night’s sleep, eating three good meals, staying hydrated, sitting in the sun for a few minutes and just enjoying life, taking all my vitamins, and waking up pain free.

Spoon-reducing factors include flare-ups, sickness, waking up in pain even if it later goes away, failure to look after myself, a late night or early morning, a bad dream, difficult people or conversations, and stress.  The longer a flare-up goes on, the fewer spoons I will have each day as exhaustion, prolonged pain and depression eat away at them.

One consequence of this is that chronically ill people have to be super aware of our spoons.  I am not always very good at this and frequently overestimate my own abilities, leaving me without the physical resources to be useful in the latter part of the day.  Generally speaking, though, I am aware that I live life in a series of trade-offs – if I do X, I can’t do Y.

Up until this little flue debacle, things were going relatively well – last week I had sufficient spoons to do something after work every night of the week, whether it be walking the dog, writing a blog post or driving thirty minutes to see my parents.  Sure, some nights I was cutting it extremely close to the wire and had to massively overcompensate with caffeine on Friday which led to terrible pain on Saturday (see?  Trade-offs) but overall I was pretty well supplied with spoons compared to how I had been just two weeks earlier.  This week, not so much.

Have you heard of spoon theory before?  Do you ever use it when explaining your illness to others, or do you have other methods you prefer?  Share in the comments below.

Great Hair When You Don’t Care

Yesterday I talked about getting rid of unwanted hair.  Today I want to talk about what to do with the stuff on top of the head.

Given the effort I put into cleaning my face, you’d be forgiven for suspecting that my hair routine is equally extensive.  It isn’t.  I love my hair but I hate dealing with it.  I wash it once a week, if that, and it does usually get brushed if I’m going to work.  There’s maybe a 30% chance of it getting brushed on a sick day or weekend.  It’s generally the first thing to get neglected when I’m really struggling.

For that reason, I have a series of go-to hairstyles for when I am sick, tired, or can’t be bothered but still need to look professional for court or like I made some sort of effort.  It helps me look better, which helps me feel better, and making the effort sets my day up in the right way.  That being said, I don’t want to actually have to make a big effort, I just want to look like I have.  Thus, here is a list of hairstyles I use.  Bear in mind that my hair is medium to long, so these styles may not work for shorter hair.  My hair is also very thick, so people with very thin or fine hair may need hairspray or some sort of product to increase volume (that being said, I still try styles designed for people with much thinner hair and just pin them to death).  Having very ordinary white girl hair, this post probably won’t be of much assistance to my black sisters.

None of these tutorials are mine, of course.  I don’t have the skills.  These are just tutorials that I love and keep handy for my low-effort days.  I have worn each and every one and I can confirm that they are both easy and fancy, perfect for those days when you really need to be lying in bed crying but still have to drag yourself into work.

1) Upgraded ponytail

A basic ponytail is a great thing, but just a little bit of extra work can make it into something just a little more put-together and voluminous, which I think makes a person look more energetic and gives the impression of someone who really has their act together.  The beautiful Kaylee Melissa (I’ve been a die-hard fan for years) does this great tutorial on some really easy ways to take your ponytail to the next level. I find her tutorials very easy to follow and she just has such a lovely vibe.  Follow this link to the original video.

2) The Textured Sock Bun

Everyone knows of the sock bun, but I particularly love Emily’s (the Freckled Fox) version because it doesn’t even require me to tidy my hair first and it still looks super professional.  It’s corporate but not boring and it takes so little effort.  I wore a slightly more embellished version today, but I use one of the dark brown foam forms you can pick up in Woollies rather than a sock.

3) Tucked Half-Updo

Tuck and Cover Half 2

I love a pretty half-up style, and this one from Missy Sue is both easy and beautiful.  I think it looks best on curly hair, but it is doable on any texture.  It gets the hair out of your face and is office appropriate as long as your headband isn’t too wild.  I actually worse a similar style (full updo, though) at my wedding, and I can confirm that it is pretty quick and easy but looks so dressy.

4) Knotty Updo

Lulus How-To: Knotty Updo Hair Tutorial at LuLus.com!

If you do need an office-appropriate updo but don’t want to do a bun, this knotty style is a gorgeous alternative.  If you can tie a knot, you can do this.  I’ve worn it in court and it looks professional, intricate and like I actually really tried.

5) Candy Floss Bun

Hair Tutorial: Cotton Candy Bun

I can’t finish without this super cute bun.  It’s not one I’d wear to court but I just love it so much.  It’s so fun and voluminous!  Admittedly combing it out the next day can be a pain, but that is a problem for tomorrow me.  It’s incredibly easy, and because I’m a cheapskate who doesn’t like washing her hair I don’t use any product in it (it still stays fine).  It’s great for casual Friday or a day I’m not in court.  You can also do the style a bit further down the back of your head for a slightly more professional look.

Thus concludes my round-up of work-appropriate styles for when you are struggling and can’t devote much time or energy to hair.  There will always be days when you can’t do even these simple styles and your hair should consider itself lucky if it is brushed and moderately clean. but hopefully these will give you some go-to styles for days when you have some energy, just not very much.

If there is interest, I’ll do a similar round-up of quick and easy formal dos.  Also, if any short-haired peeps or curly girls want to do a round-up of endo-friendly hairstyles for different hair lengths and types, please let me know – I’d love some guest posts on that sort of thing.

Have you tried one of these styles?  How did it go?  Any others that should be on this list?  Let me know in the comments.

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?

Working Through It

It’s no secret that a chronic illness can severely impact your ability to have a normal career, and endometriosis is no exception.  Whilst some amazing endo warriors are able to manage extremely active careers such as badassing their way through the military, others are not so lucky.  When endometriosis affects your ability just to get out of bed, it is guaranteed to affect your job.  It can be extremely disheartening to watch a career you’ve worked hard on disappear down the drain.  I have a Masters of Law and I love litigation and the important work I do, but unless my health takes a dramatic turn for the better soon, I’m going to have to bow out and move into a less active role, such as drafting legislation or policy (not my area of interest at all).  If it gets worse, I may not be able to work at all, and my seven years at university earning multiple degrees may be rendered worthless, economically speaking.  If that happens, I’m going to have to try and turn this blog into a business.  Hopefully that explains why I am desperately keen for readers.  Tell your friends.  Make them feel guilty so they come and read this.

In this post I want to talk about some careers that are definitely easier for people with endo, and some tips and tricks on getting through the harder ones.

Job Options

The best jobs for a person with endometriosis will be those that:-

  1. Allow flexible working days;
  2. Don’t involve heavy physical activity; and
  3. Come with an understanding boss.

Obviously, the easiest way to achieve all of these things is to have a job that lets you work from home.  There are a multitude of jobs that allow you to do that, either self-employed, freelance, or as an employee.  Some people blog.  Some people write articles for online publications. Some people proof-read or edit, or design websites, or make and sell things on Etsy, Amazon and Ebay.  Others pick up jobs through websites like Airtasker, or run Tupperware parties.  Some people make a living out of house-sitting.

There are downsides to many of these, though.  Whenever you work from home your social interaction tends to be limited, which is always a problem with a disease that automatically limits your ability to socialise anyway.  Not dealing with office dramas may be a blessing for a short period, but long term it can really negatively affect your mood.

Many of the jobs listed are not financially stable, either.  Working the 9-5 has two major benefits over freelance or self-employment – guaranteed income, and superannuation.  Trying to kick-start your own business is incredibly challenging and it often takes a while before you break even financially.  Even then, you may make only pocket change, which could be fine if you have a fully-employed partner who can afford to support the family, but isn’t so great if you are the sole bread-winner.

In addition, you need some sort of marketable skill.  What if you aren’t a great writer, aren’t tech-savvy enough to build a website or offer online tech support, and don’t have some sort of skill or item that you can easily sell online?  Sure, you could turn to Airtasker, but a lot of the jobs on offer are physically demanding (cleaning or helping people move) or poorly paid (or both).

Being employed to do something like parties may provide a little more financial security, but it does require being able to commit to dates and times, carry all your stuff, and there is usually an initial buy-in to get your starter kit.  It’s usually great value, but it’s also usually not cheap.

However, the ability to earn money with nothing but a laptop and a comfy sofa would be a great comfort, and not having to worry about the boss pestering you about not being in the office again would take a big load off.  Best of all, no one cares if you wear your pjs to work when it’s just you at home.

At the other end of the spectrum we have more traditional 9-5 jobs.  They can encompass everything from mobile services like gardening or plumbing, hardcore active jobs like construction or aerial window-washing, on-your-feet-for-hours jobs like medical staff, retail workers or service professionals, or your bog-standard office job.

The more active your job and the worse your endo, the harder you are going to find it, as a general rule.

My job involves a fair amount of sitting on my bottom typing letters, researching, and making phone calls, which is all fine and dandy.  It also involves a lot of hurrying to court and, when at court, dashing back and forth filing documents, corralling clients, and trying to find which magistrate I’m supposed to be before.  It can get active.  The activity is generally ok while it lasts because I am far too stressed and absorbed in what I’m doing to notice the building pain, but when I stop, it hits me like a ton of bricks.  That’s not great if I’m sitting at the bar table trying to concentrate on what the other party or the magistrate is saying and the pain comes rolling in.  Judicial officers don’t like it when you don’t pay attention.

On the plus side, my job pays relatively well and contributes to my super at an unusually high rate.  Leave rates are generous (not that I have any left) and I have the option to ask to go part-time (which I can’t afford and don’t want).

The good thing about an office job where you can sit down is you can generally arm yourself with tea and heatpacks.  I honestly don’t know how people with endo in more active jobs do it.  You are heroes for coping that well.  Nurses and surgeons leave me gobsmacked.

One of the hardest things I find about dealing with an office job is coping with the almost unavoidable notion that you are unreliable.  When you have big chunks of time where you simply cannot be at work, that’s an impression that is extremely hard to counteract, because it is partially true.  It’s your health that’s unreliable, not you as a person.  Unfortunately, the difference is pretty much semantics for your boss and the colleagues that have to pick up your work in your absence.  Thankfully an office comes with some workplace guarantees and employment law protections, which I will talk more about in another article, to allow you some sense of job security.

That’s my rather ambivalent run-down of types of employment for the chronically ill.  They all have pros and cons.  Ultimately it’s up to each individual to figure out what fits with their pain level, abilities and lifestyle.  The unfortunate reality is that many of us will have to work jobs we can barely manage to be able to make a liveable wage, and others will sacrifice dreams we have worked incredibly hard for because they are literally not physical possibilities any more.  Poverty is always lurking in the background, reminding us that we aren’t allowed to give up in a world that largely values people for their productivity.

Coping at work

If your job allows, there are a couple of things I absolutely encourage you to do.

Have a heatpack ready

You may get some side-eye from colleagues (probably male) who think it is scandalous to have any appearance of period pain (they probably call it “lady troubles” or something similar), particularly when they figure out you use your heatpack more than one week per month.  Stuff ’em.  Let them be scandalised.  Most people will hopefully just give you a supportive smile or have the tact to pretend it’s normal to be clutching a wheat bag to your stomach.

Keep painkillers on hand (but not the strong ones)

Always have panadol and/or ibuprofen ready if they offer you any sort of relief at all.  I wouldn’t recommend going much strong at work because stronger drugs have a higher likelihood of messing with your thought processes.  If I take a tramadol and then try to give legal advice I’m going a long way towards getting sued.

Assess carefully whether to tell your boss/colleagues

Some bosses are great at understanding and can help you much more when they know what is what.  Others will use your illness as an excuse to come down hard on you, give you unfair performance reviews, and build a case to fire you.  There may be legal remedies but that doesn’t mean it is fun to go through.  Get a feel for them.  If you think they are trustworthy and will support you, let them know what you are going through and give them a heads up that there will be times when you can’t be as reliable as you would like, and you will do everything you can to make up for that.  Otherwise, I would consider keeping the official diagnosis to yourself until you don’t have much of a choice but to reveal it.

If you have some colleagues that you can trust to be supportive, let them know.  Having just one person in the workplace you can ask for help on bad days can make all the difference.

I’m blessed with a great group of colleagues and I am extremely open about my endometriosis, the effects on my life, and what I have to go through medically.  I’m in a position where my bosses know anyway, and are mostly pretty good about it, so I use the opportunity to raise awareness, educate, and have a good whinge.  Some workplaces are not so open and this would not be professional – assess the vibe of your colleagues and workplace before spilling the beans to all and sundry.  I should also emphasise – don’t tell your clients/customers/whomever unless you are in a position where you aren’t left with a choice.  That’s unlikely to be viewed as professional and generally speaking, you don’t want clients knowing too much about you anyway.

Rest when you can

If an opportunity comes up for you to take a quick lie-down or maybe even do some stretches, take it.  Get to bed early, sleep in for as long as you can.  If you have a quiet period coming up at work and you have some leave that you can’t use for medical purposes, snatch that opportunity.  Being well-rested can help reduce the likelihood of flare-ups.

Rest mentally as well.  Literally every doctor, medical article and online guru ever says to avoid stress, but I have yet to encounter a job that doesn’t carry its own unique way of stressing you out anyway.  I cannot avoid work-related stress unless I don’t work.  I will always have clients in bad situations, rapidly-approaching deadlines, and totally bizarre work emergencies.  You can’t get away from that, unless it is your job to review beaches in the Bahamas or something.  (If it is, please, hook a girl up.)  That’s why you should take the time you can to relax and unwind.  Avoid taking work home, or out of the home office.  Practice mindfulness and the more indulgent forms of self-care.  If you can exercise, get those lovely endorphines flowing.  See friends.  Hang out with dogs.  Do things that make you happy whenever you can.

Invest in a Livia or Painmate

I’ve already discussed portable TENS machines a bit here, and honestly, having a discreet little TENS you can have under your clothes at your desk is just wonderful.  I find it so much more effective than painkillers.

Build up your leave

This isn’t advice I like giving.  I want to say “take the time your body needs to rest and don’t feel guilty about it.”  I want to be able to do it, too.  Trouble is, that’s not conducive to holding down a job and bringing in an income, and that is a reality too many of us with chronic illnesses face.  On the days where you are in pain but can still make it in, you have to, because you need to save up that leave and that money against the days where you just can’t.  It’s awful and I hate it, but that is the way we have to live.

Know when to call it quits

In the end, there is only so much you can force your body through.  Listen to yourself.  If you literally cannot manage work any more, there is no shame in reducing your hours or leaving the workforce altogether.  Your work is not your value as a person.  Your productivity is not a measure of your worth.

I know that leaving the workforce is a terrifying idea for many people for financial reasons, and in the future I want to do a post on accessing Centrelink, the NDIS, and other supports for people who cannot or should not work.

 

Do you have any tips and tricks to get you through the work day?  How have you balanced a career with your endometriosis?