Disability-friendly Policy

Nothing about us without us.

You may have heard that quote doing the rounds a few times. To me, it’s super powerful and calls out a big problem with disability policy – it is often made with only minimal or token consultation with disabled people.

I’ve had cause to think about workplace disability policy a few times this year already, and now, during Endometriosis Awareness month, I really want to write about what I think good disability policy should look like.

1) Say why you have it, and do it properly

A lot of policies are all “Woo, diversity! 20% quota for people with a disability by 2050!” or something like that, but they don’t say why. At best, there is often a vague line about “because disability gives you unique perspectives!” and that’s it. That really makes it sound like the workplace is ticking a politically correct box rather than having a genuine desire to engage – employing us just becomes an exercise in making the workplace look good. Gotta catch ’em all.

What I would love to see is engagement with some of the real reasons employing disabled people is good. Reasons like:

  • It’s good for the economy to have disabled people employed in the first place;
  • It’s good for the workplace to have disabled people employed with reasonable adjustments so that they can produce their best work;
  • We are able to provide diversity of experience and viewpoints that abled people don’t have;
  • Having robust disability policy benefits abled people who are just one broken leg, back injury, car crash, or unfortunate diagnosis away from needing to use it themselves.

2) Make sure it is accessible

When you have a policy, advertise that you have it. Hand out hard copies at inductions. Pin it to your intranet. Make sure everyone knows it is there. Maybe make it compulsory reading, just like the code of conduct and your security policy.

Further, make sure everyone can actually read it. Is it available in accessible format for screen readers or text-to-voice readers? Is the language clear and simple?

3) Make sure the policies actually work

Maybe you have this really great policy allowing disabled people to access extra paid personal/sick leave…but they can only access it if they meet a whole bunch of extremely specific criteria, or are reliant on colleagues donating it, or they must have exhausted all of their annual leave to use it.

My proposal? Many workplaces allow you to buy additional paid annual leave at a one-for-one rate (e.g. you pay one week’s salary to get one week of additional annual leave), and the cost is spread out across your pay over several months or weeks. You usually have to meet some criteria, like you need to nominate a particular time to use it within.

Why not make a similar scheme for additional paid personal leave?Those of us with chronic conditions, who quickly exhaust our paid personal leave, often have to take random, unpredictable, but sometimes length chunks of unpaid leave. We might end up only have three paid days in an entire fortnight as a result. That can be really financially difficult.

If we could buy an extra, say, two weeks paid leave at the beginning of the financial year, and have that financial burden averaged out across our pay slips for the remainder of the year, we’d be losing just a few dollars a fortnight (or month, however often you are paid) rather than the majority of a single pay packet. We’d have a large additional buffer zone against needing to access our unpaid personal leave, and we’d be less likely to come to work when we are just a bit sick with a cold and spread our germs around because we are trying to guard against not having sick days during our next paralysing flare-up.

Sure, it should come with conditions to ensure it isn’t misused. I would recommend the following:

  • A doctor’s certificate stating that you have an ongoing condition or disability that will sometimes necessitate unpredictable sick days at a higher rate than the general population;
  • A cap on the amount (say an extra 2-4 weeks per year);
  • Approval from your manager, noting that they have also ensured that you are aware of your other rights and options under the disability policy (e.g. flexible work arrangements);
  • A requirement that we still provide medical evidence for that absence as usual;
  • A requirement that we have three days or fewer of existing paid personal leave.

Conditions I would not suggest are the following:

  • A ‘use it or lose it’ policy – some years, I might have a great year where I only need three days of personal leave (unlikely), but the next I may need three months. One good year isn’t indicative of my needs in the next year;
  • No ability to roll over unused purchased leave til the next year (see the first point for why);
  • A requirement that we have used all our annual leave – chronically ill people will rarely get to take actual holidays. Often, we’ve already exhausted our annual leave trying to ensure we don’t have large chunks of no payment due to having no paid personal leave. But holidays, breaks, mental health days – they are a right our abled colleagues all enjoy. They make people more productive, happier and healthier. Taking that away from us because we are sick means that the only time we get to spend away from the workplace is days where we are sick. Imagine if that was all abled people had too. It doesn’t make for a happy or productive workplace. Besides, if we are paying for our sick leave, we aren’t costing the workplace anything financially.

I think that the current crises highlights more than ever why the ability to acquire additional paid sick leave is vital. My wonderful workplace is providing extra sick leave to anyone who gets Covid-19, but not all workplaces will (admittedly, not all are equipped to). However, I would argue that being equipped for emergencies (not necessarily a global pandemic, but a bad flu season, perhaps) is part and parcel of running an organisations, particularly a large one. My supervisor says he banks on 1/3 of the work force being out during flu season for one reason or another; perhaps that is a good motto for anyone running an area with multiple staff.

4) Make sure your managers understand

I have been very lucky in my current workplace to have extremely understanding bosses, some of whom have very close experience with chronic illness or disability. However, not everyone is so lucky. I’ve heard nightmare stories of bosses who refuse to give disabled people opportunities, because they perceive them as:

  • inherently unreliable;
  • not entitled to ‘take up’ an opportunity that could go to an able-bodied person; or
  • not up to the demands of the opportunity.

Whether it is because the manager views the disabled employee as less capable, or is micromanaging to ensure they don’t get in trouble for pushing the disabled employee past their limits, the effect is the same – no opportunities for the disabled employee. That means no promotion, no career advancement, and a waning desire to remain in the job.

Having managers be educated, supportive, able to talk to the disabled employee about their needs, and able to strike a balance between supportive and over-protective is key. Get managers trained in having disabled staff.

5) Create visibility, opportunity and education

Finally, ensure that your disability policy doesn’t just employ disabled people and support them at their current level; make sure it allows disabled people to move through the ranks. Encouraged higher-ranking disabled people to be open about their disability by creating a culture in which doing so does not disadvantage them. For people at the bottom of the ladder, seeing that there are disabled people on the rungs above them gives them hope that they can also achieve that, which creates motivation and provides better workers for the employer.

It also normalises disability for people who aren’t used to seeing it, particularly in positions of power. That creates an all-around more inclusive and accepting workplace.

Don’t just stop at educating your managers, who will be supervising and mentoring disabled people – educate everyone. My workplace does sessions based off the ABC show “You can’t ask that” that allows non-disabled staff to ask questions about disability in an anonymous, judgement-free way, and hear answers from people living with those disabilities. It’s a great way to educate without having formal training sessions (which can be kind of weird and alienating when you are the person that the session is about!). Create days about diversity – have stalls and education campaigns explaining what it is like to have a particular disability. Send out newsletters. Educate the masses.

That’s my hot take on what larger workplaces can do to ensure they have a useful, robust disability policy. Do you have any suggestions I’ve missed? What does your workplace do well in this area? What does it do poorly? Let me know in the comments.

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Coronavirus

Hi all,

I want to apologise for the delay in posting. I had a post mostly ready to go, but with coronavirus doing what it’s doing, it didn’t feel right to proceed with my planned schedule without addressing the pandemic first.

This is not a fun time. It feels like half the world is taking this whole thing too seriously, and hoarding loo roll as a result. It feels like the other half is not taking it seriously enough, and refusing to take sensible measures to flatten the curve.

I know I’m not likely to die if I get coronavirus. Despite having a shockingly poor immune system, I don’t have any lung issues. I can’t say the same for my grandmother with one lung, who lives in a nursing home, which are basically disease-boxes. Nor can I say the same for my asthmatic friends. I’m worried about my uncle, who is a doctor, and my aunt and cousin, who are nurses. I’m worried about my husband, whose work exposes him to people from so many different situations that it could come at him from anywhere. I’m worried about my teacher friends, surrounded by hundreds of children every day with no way to maintain distance.

I’m worried about my friends who earn their living as casual workers or performers as businesses reliant on large groups of people gathering in small spaces close, or reduce their workers’ hours. I’m worried about small businesses I have affection for and loyalty too having to close their doors.

I’m worried about separated couples having to navigate co-parenting and quarantine. I’m worried about victims who live with their abusers, trapped in homes with them. I’m worried about people with depression, anxiety, mental illness and chronic pain becoming even more socially isolated and afraid, and the toll this will take on their mental health.

I’m worried about hospitals being put under so much pressure that doctors are forced to chose who to save, or leave people in pain and distress as a half-measure because there isn’t enough to keep everyone pain-free or healed.

I just want everyone to take sensible measures. Act pre-emptively in areas where coronavirus is not yet widespread, and take all possible precautions in areas where it is. Don’t hoard. Help your neighbours out, particularly if they are elderly, sick, disabled or isolated. Help those struggling financially if you have a little extra cash. Keep supporting local business where you can. Look after your mental health and maintain social networks as far as possible. Don’t panic. Verify your sources of information and take proper advice. Wash your hands. Understand that you being healthy doesn’t mean you aren’t a vector. Understand that health is not the same as immunity. Know the symptoms, and get tested appropriately. Just be good people, and good members of the human community.

I hope all my readers are staying safe and looking after themselves. I know many of you will be vulnerable to this disease, and are probably scared and feeling hopeless as people continue to blow it off as ‘a bad flu’. I’m sorry if you get glib responses like that to your valid concerns. I hope you don’t catch the virus, and if you do, I hope your symptoms are mild and your recovery is swift.

I wish you all the best.

xxxx

The Magic of Music, Part 2

Back in 2019, I wrote a post on some songs I keep in my endometriosis playlist to listen to when I’m having a bad day. Today, I want to list 5 more.

I know there are way more amazing songs out there than I can possibly list here, so please go ahead and drop some more recommendations in the comments. What do you listen to when you are having a bad day? Do you have a favourite song about chronic illness?

1) Fight Song, by Rachel Platten

This song isn’t just about fighting; it’s about fighting when you don’t have anything left, when you don’t have any sleep or anyone left on your side.

Lyrics:

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosionAnd all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in meLosing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believeAnd all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in meA lot of fight left in meLike a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosionThis is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong (I’ll be strong)
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

Know I’ve still got a lot of fight left in me

Favourite line: I might only have one match, but I can make an explosion.

Listen when: You need the inspiration to go just one step further

2) I Can’t Feel, by Yours Truly

‘I Can’t Feel’ was written by a fellow spoonie, singer Mikaila Delgado, who has Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that causes hyper-mobility and tissue fragility. Just like those with endo, people with EDS often suffer pain with no obvious cause. Delgado shares her frustration, exhaustion, and loneliness in a world where pain wears us down, people don’t believe us and we so often go without answers.

Lyrics:

I don’t know if I’m feeling right
Like this is something that’s in my mind now
There’s no signs, there’s no symptoms here
I’m aching in my bones, it’s getting out of handBut I’m not afraid of this
If only I could put this mind to rest
My days blend into one another see
Give me a moment to step back and breatheI always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
I wish that I could sleep at night
Close my eyes and feel alright
But my conscience, it has other plans and II don’t know if I’m feeling right
They tried to tell me it was in my mind and I’ve
Been sleeping for days on end
Getting told to get out of my bed and move forwardI can’t explain the pain
I’m fucking over itI feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
I wish that I could sleep at night
Close my eyes and feel alright
But my conscience, it has other plans and II can’t feel
Anything else
But my heartbeat soaring
I always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
Yeah, I’ve had enoughI’m not afraid
If only I could put this mind to restI always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
Wish that I could sleep at night
Close my eyes and feel alright
But my conscience, it has other plansAnd I can’t feel
Anything else
But my heartbeat soaring
I always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
Yeah, I’ve had enoughI’m sick of waiting for a change
That will never come my way
When I tell you that I’ve had enough
Yeah, I’ve had enough

Favourite line: They tried to tell me it was in my mind and I’ve been sleeping for days on end, getting told to get out of my bed and move forward

Listen when: you need to feel like someone else gets it.

3) Get Better, by Leslie Mosier

Leslie Mosier actually has endometriosis, so she definitely understands how it feels. ‘Get Better’ really encapsulates the struggle. The video also includes a lot of things we would be familiar with – TENS machines, endo belly, curling up in a little ball in bed. Of all the songs on this list, this one is definitely hits the closest to home.

Content warning: the video does contain needles, drugs and surgical procedures. It also contains a cute cat and a pug.

Lyrics:

Who was I before this?
Will I make it through?
The pain is slowly creeping
Till there’s nothing I can do

My body in a circle
Clouds fill up my eyes
I wait for it to kick in
So the hurt can be disguised

Breathing just feels harder
Down I go again

Wake up, put on the makeup
And smile for the camera
Work hard, make money
Maybe that will make me feel alright

No one really knows what you’re going through
But they pretend to say they’re thinking about you
I’m fine, I’ll be alright
I just wanna get better, I feel like I’m a burden
A liability
But who am I to give a damn
When my own body turned on me

Keep pushing on to see better days
Even when it hurts
I’m not defined by the times I’ve cried
Or fallen to the dirt

Breathing just feels harder
Down I go againWake up, put on the makeup
And smile for the camera
Work hard, make money
Maybe that will make me feel alright

No one really knows what you’re going through
But they pretend to say they’re thinking about you
I’m fine, I’ll be alright
I just wanna get better

Here I go, here I go, here I go again
I’m at war with my body, my closest friend
I’ve been broken, I’ve been down got up in the end
Here I go, here I go, here I go again

Wake up, put on the makeup
And smile for the camera
Work hard, make money
Maybe that will make me feel alright

No one really knows what you’re going through
But they pretend to say they’re thinking about you
I’m fine, I’ll be alright
I just wanna get better

Favourite line: Who was I before this?

Listen when: you want the endo experience captured in a single song

4) Have It All, by Jason Mraz

‘Have It All’ has nothing to do with chronic illness, but I’m including it nonetheless because it always helps me. I sing it in my head and dedicate to a different person each time whose life I want to be beautiful and lovely even when mine isn’t, whether it be my sister, my best friend, or all the people out that also suffering from chronic pain.It’s just so nice.

It also reminds me of the good things in my life – my friends and family, whom I deeply love – even when I’m in a lot of pain and can’t do much stuff. During those times they can still bring me fun and happiness.

Lyrics:

May you have auspiciousness and causes of success
May you have the confidence to always do your best
May you take no effort in your being generous
Sharing what you can, nothing more nothing less
May you know the meaning of the word happiness
May you always lead from the beating in your chest
May you be treated like an esteemed guest
May you get to rest, may you catch your breath

And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow

Well here’s to the hearts that you’re gonna break
Here’s to the lives that you’re gonna change
Here’s to the infinite possible ways to love you
I want you to have it
Here’s to the good times we’re gonna have
You don’t need money, you got a free pass
Here’s to the fact that I’ll be sad without you
I want you to have it all

Oh! I want you to have it all
I want you to have it
I want you to have it all

May you be as fascinating as a slap bracelet
May you keep the chaos and the clutter off your desk
May you have unquestionable health and less stress
Having no possessions though immeasurable wealth
May you get a gold star on your next test
May your educated guesses always be correct
And may you win prizes shining like diamonds
May you really own it each moment to the next

And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow

Well here’s to the hearts that you’re gonna break
Here’s to the lives that you’re gonna change
Here’s to the infinite possible ways to love you
I want you to have it
Here’s to the good times we’re gonna have
You don’t need money, you got a free pass
Here’s to the fact that I’ll be sad without you
I want you to have it all

Oh, I want you to have it all
I want you to have it
I want you to have it all

Oh, I want you to have it all
All you can imagine
All, no matter what your path is
If you believe it then anything can happen
Go, go, go raise your glasses
Go, go, go you can have it all
I toast you

Here’s to the hearts that you’re gonna break
Here’s to the lives that you’re gonna change
Here’s to the infinite possible ways to love you
I want you to have it
Here’s to the good times we’re gonna have
You don’t need money, you got a free pass
Here’s to the fact that I’ll be sad without you
I want you to have it all

Oh, I want you to have it all
I want you to have it
I want you to have it all

Here’s to the good times we’re gonna have
Here’s to you always making me laugh
Here’s to the fact that I’ll be sad without you
I want you to have it all

Favourite line: May you get to rest, may you catch your breath

Listen when: You really want to think about someone else instead of your pain.

5) Skyscraper, by Demi Lovato

‘Skyscraper’ is about a relationship rather than a chronic illness, but just imagine, if you will, that she is singing to your endo. It’s a song of defiance even in the pain and desolation.

Lyrics:

Skies are crying, I am watching
Catching teardrops in my hands
Only silence, as it’s ending
Like we never had a chance
Do you have to make me feel like
There’s nothing left of me?

You can take everything I have
You can break everything I am
Like I’m made of glass
Like I’m made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper, like a skyscraper

As the smoke clears, I awaken
And untangle you from me
Would it make you, feel better
To watch me while I bleed?
All my windows still are broken
But I’m standing on my feet

You can take everything I have
You can break everything I am
Like I’m made of glass
Like I’m made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper, like a skyscraper

Go run, run, run
I’m gonna stay right here,
Watch you disappear
Yeah-oh, go run, run, run
Yeah, it’s a long way down
But I am closer to the clouds up here

You can take everything I have
You can break everything I am
Like I’m made of glass
Like I’m made of paper, oh-oh
Go on and try to tear me down
I will be rising from the ground

Like a skyscraper, like a skyscraper
(Like a skyscraper)
Like a skyscraper, like a skyscraper

Favourite line: Do you have to make me feel like there’s nothing left of me?

Listen when: You need to feel a bit more defiant.

August Gratitude

August has slipped away and we are finally into spring! Before I can celebrate the joyous arrival of that lovely season, though, I want to talk about what I was grateful for in the final month of winter.

I’m sorry it has taken me so long to do this.  I ended August on a bad note, with a solid two weeks of pain that eventually got so horrific I was forced to take a week off.  It’s always super depressing that happens, because you start questioning the effectiveness of your treatment and eventually spiral down into deciding that nothing will fix you and you are doomed to be eaten alive by your own uterus.  It’s hard to be grateful in those circumstances and it has made this list a little harder to complete.

Nevertheless, grateful I am and grateful I will continue to be.  Here’s what about.

1) Having a warm home

I used to volunteer in a men’s homeless shelter overnight in winter. You’d sleep on the ground in the church hall we were given for it, inside a sleeping bag. Even with my cosy sleeping bag, it was chilly. Of course, I only had to do that one or two nights a month. For the men that utilised the shelter, they had to sleep in those conditions or worse every night.

Burning Firewoods
Image description: a wood fire burning in a brick fireplace.  

Australia can get cold at night. Really cold. Dying of exposure is a possibility. Each winter I am grateful for four walls and a roof, a warm bed and fluffy pyjamas.  I am glad that my pets are also safe and warm around me.

2) Wonderful work friends

As I noted in July, our team grew again, and I’m delighted that our new additions are, like my existing colleagues, smart, capable, hard-working, kind, hilarious women that I can have a good laugh with even whilst we are working under heavy pressure to produce good stuff. With or without these ladies, my work would be interesting, but they make it delightful. People really do make a workplace.

3) New suit

It’s red. It’s fabulous. It was on sale. Enough said.

Image result for review australia aries jacket
Image description: a blonde white woman wears a black dress with flowers printed on it and a dark red blazer with a waterfall front.  This is the jacket from my new suit.  Image and jacket from Review Australia.  

4) Blue skies

You know those windless winter days where the air is still crisp and cold but the sun is beautifully warm and the sky is a perfect rich blue without a cloud in sight? Australia does those days well. I love them, and the end of August gave me plenty of them.

5) Gorgeous sunsets

The sunsets really started to get pretty in August. They’d be gold at the horizon, fading up through pink, into violet, through all the shades of blue. The city skyline and the hills around were silhouettes perfectly against it. It was all just super pretty.

6) Two straight weeks of work

Sure, I ended August with a horrific flare-up and the two weeks leading up to them involved a fair amount of pain, but I managed them at work and I achieved good stuff.

7) Age of Empires

Image result for age of empires
Image description: computer graphics showing some short wooden towers and walls on either side of a path.  There are trees and cliffs to their right.  Further to the right is a stone house and a stone tower, looking over the coast line.  In the very blue sea is a dock and three little ships.  The text across the picture reads, “Age of Empires II: HD Edition.”  

 

I got my first copy of AoE in a box of Nutrigrain. It was great. My sister and I soon acquired Age of Empires II: Age of Kings. We were thrilled when Age of Empires III came out. It’s fun, it’s pretty, you get to fight the French. I went on a bit of a binge during August and enjoyed not only the game, but the nostalgia too.  There are many different nations to play as and against, each with their own distinct characteristics and style.  Also exciting: apparently there is going to be an Age of Empires 4 released next year.

8) B12 spray

Image description: a white spray bottle with a blue label that reads: B12 Liquid.  

I take a LOT of vitamins. Between the IBS and the endo and the various deficiencies, I have to swallow a lot of tablets. Not only is a sublingual spray a more efficient way of absorbing B12 (particularly important for vegans), it’s relatively tasty and it is one less pill to have to force down your throat.  It’s actually a big relief for me to find a way to take this important supplement without having to fight nausea to do it.  I use this bad boy: https://www.discountepharmacy.com.au/bioceuticals-b12-spray/

9) Tofu

Maybe it sounds like a silly thing to be grateful for, but I really am.  It’s such a versatile and delicious food.  It’s really quick to cook and it doesn’t cause me digestive issues.  It’s very nutritious, with plenty of protein and surprising amount of iron for a such a pale, flabby-looking food (I always associate iron with dark colours like kale or spinach).  I particularly like it as a scramble (crumbled into a frying pan with oil and whatever herbs, spices and vegetables I fancy) or fried in a coating of salt, pepper and flour.  Yum.

10) My parents

Once again, my parents helped me out during my week of sickness.  My mum came out twice, brought me some groceries and did some of my laundry, and my dad came out once, drank my tea and then had to leave because he’s allergic to my cat.  Having help with the chores went you can’t stand is just the biggest weight off your mind – not only does a cleaner space make my mental health better, it relieves the pressure on me and on my husband, who of course otherwise has to pick up the slack when I’m sick.  Even just having company makes a big difference – being home sick is a lonely, isolating experience.  You feel a bit unloved and a bit useless.  Company helps relieve that.

 

What were you grateful for in August?  Anything amazing happen?  Did you have to struggle to find the silver lining in the clouds?  Let me know in the comments.

Decisions, Decisions, Part I: Employment

As my regular readers will know, at the end of last year I made the very difficult decision to leave my job as a litigation lawyer and move into a more policy-focused role without any litigation element. It was a big change, and it felt like a big loss. As much as I adore my new job, there are certainly elements of my old job I miss. Most of all, I am sad that the decision wasn’t one I could make because I wanted to, but because I had to.

Now, as my endo and adeno continue to cause trouble, I’m faced with another decision – reducing my hours.

Today, I want to talk about how you make these types of decisions. I highly recommend using a journal to write down your thoughts on this, or to talk at someone. I find it helps solidify my reasoning and makes me think it through logically and thoroughly.

Basically, there are a lot of questions to ask yourself.

First, and most obviously:

1) Can you physically do it?

Whether you are asking this about the number of hours your are working, the type of work you are doing now, or the type or work you are looking to move into, it is the most basic consideration. If you cannot get through a full day without the pain driving you to your knees, or sending you to the bathroom to cry multiple times a day, or forcing you to take serious painkillers that compromise your ability to do your job in other ways, it might be time to rethink your current work.

When thinking about this, don’t just take into account whether you can struggle through a work day. Think about whether you can get through a work day and still have the strength to feed yourself, keep yourself clean, and complete those basic necessities of life? Life does not begin and end with work, and if a full-time day in your current role results in you collapsing into bed fully dressed as soon as you crawl through the door every day, that job is not working for you. Some days like that are a reality for many people with chronic pain, but if that is the majority of your days, it is not sustainable and you will end up in a really, really bad way.

2) Are there changes you could make that would let you keep the status quo?

Now, it may be that cutting your hours is the change that lets you keep your job, but other things might work too. If you work in a standing role, such as at a checkout, and you find that painful, could your employers give you a chair? If you have an office job that involves sitting all day, could a sit-stand desk help? Would a heatpack at your desk make a difference? If you struggle more in the mornings, could you start and finish work later, or vice versa if your pain is worse in the evening? Is there any way you could work from home for a day a week?  If you have to wear a uniform, are there allowances that could be made for a stretchier waistband or more comfortable shoes?

Remember that the Disability Discrimination Act mandates people making reasonable adjustment for disability (see section 5). If you aren’t sure that what you are asking for is reasonable, or your work is saying it isn’t, consider a chat with a lawyer. Legal Aid commissions around the country have helplines for free advice, and many lawyers will give you a free initial consultation or do the first 15 minutes for free.

Please note that the above is not legal advice.

Ultimately, though, if there isn’t an adjustment that will do enough to let you stay where you are, that’s another sign it may be time to move on.

3) Can you afford it?

Sadly, this is the worst question, but it is one of those horrible realities that ultimately dictates what you choose. It can put you in an awful situation where your body can’t physically afford for you to keep working, but your family (or even just you) can’t afford for you to not. Let’s not pretend that the DSP is a lot of money, even if you can get it, and Newstart is even worse.

That being said, it is still a relevant consideration. If you have a marketable, flexible skill, there might be things you can do to supplement or create income outside of Centrelink. For example, if you are fluent (and certified) in a second language, you could pick up some translation or phone interpreter work. If you have good English skills and can work at a computer, editing or transcription might be good. If you are a superb knitter, perhaps there is an Etsy store in your future. With all of these, though, bear in mind that your income is reportable to Centrelink and may reduce your payments accordingly, so assess whether it is worth it for you.

If you don’t have a skill or the energy to market it, what else can you do?  Are cheaper accommodations an option (noting that moving is a big deal even when you are healthy)?  Are you eligible for government housing or rental assistance? Are there any costs you can cut down on?  These are not nice questions to ask, and I hate the idea that people have to go through this, but it is a relevant consideration.

If you know that you cannot physically work any more, but also have no idea how you can possibly afford not to work, speak to a disability advocate, social worker, or community lawyer.  Ask what funding options there are and what you need to do to qualify for them.  Get as much medical evidence as you can from your treating team.  I can’t guarantee that things will be fun or easy (in fact I can almost promise it will be agonisingly frustrating), or even that you will be able to find the answer, but it will help inform your choice.

What are your other options?

If you are considering a workplace change rather than unemployment or a reduction of hours, what are the options for you to move on to?  Is your prospective employer likely to be flexible?  Will the new job suit your needs?  Will you enjoy it?  Seriously, mental health is important.  You want to like your job, especially if you are spending a lot of time doing it.  Will the new job allow you to grow and advance?

These questions are, sadly, less important that the physical and financial needs, because, well, you need to be housed, fed, and capable of standing up.

 

None of the above will give you an answer, but I hope that asking yourself these questions helps make the decision a little clearer in your mind.  It may also help you justify it to other people (not that you should have to, but there are always judgemental people).

Have you had to make a decision like this?  How did you decide in the end, and do you feel like it was the right call?  Let me know in the comments.

The Magic of Music, Part 1

Music is such a powerful thing. Done right, it can invoke such strong reactions in the listener. It completely changes the tone of a scene in a movie or tv show, can get you moving on a run, or make a long drive a little more exciting.

Guess where I’m going with this.

That’s right, an endo playlist!

Sometimes, you want some songs that resonate with the pain and loneliness. Sometimes, you want something to offer hope, or buoy up your fighting spirit. Below, I’ve set out five songs that I love to listen to when I’m having a bad time.

Because this is a really huge post, I’m splitting it into two.  Keep your eyes peeled (what a weird phrase) for part 2 and another five songs shortly.

1) Head Above Water, by Avril Lavigne

I have been an Avril fan since I was a little quasi-emo teen. This song is definitely not classic Avril, but it really showcases her amazing vocal talent regardless. Written in the depths of her fear and hopelessness as she battled Lyme Disease, you know listening that this woman gets it. There’s despair, there’s hope, there’s pain, there’s resignation, there’s a cry for help. It has it all.

I’ve gotta keep the calm before the storm
I don’t want less, I don’t want more
Must bar the windows and the doors
To keep me safe, to keep me warm
Yeah, my life is what I’m fighting for
Can’t part the sea, can’t reach the shore
And my voice becomes the driving force
I won’t let this pull me overboard
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown, drown, drown
Don’t let me, don’t let me, don’t let me drown
So pull me up from down below
‘Cause I’m underneath the undertow
Come dry me off and hold me close
I need you now, I need you most
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown, drown, drown
Don’t let me, don’t let me, don’t let me drown
Don’t let me drown, drown, drown
Keep my head above water, above water
And I can’t see in the stormy weather
I can’t seem to keep it all together
And I, I can’t swim the ocean like this forever
And I can’t breathe
God, keep my head above water
I lose my breath at the bottom
Come rescue me, I’ll be waiting
I’m too young to fall asleep
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown
Don’t let me drown (don’t let me, don’t let me, don’t let me drown)
Don’t let me drown (don’t let me, don’t let me, don’t let me drown)
Keep my head above water, above water

My favourite line: “So pull me up from down below, cause I’m underneath the undertow.  Come dry me off and hold me close, I need you now, I need you most.”

Listen when: you feel like no one understands

2) Heart Full of Scars, by Rebecca Black

This song isn’t about chronic illness, but it had such a fighter vibe. It’s about someone just owning their situation and doing what they need to get through it. It always peps me up a bit.

Stop
Don’t tell me how to feel
These scars will never heal
Overnight
I’m just searching for what’s real
It’s hard enough to deal
With life
Learn to say f*** it, take my time
Life’s a bitch but I’ll make it mine
Make it, make it, make it mine
Learn to take it as a sign
If you don’t like me, get in line
You won’t break me, break me with your lies
Sometimes you bleed for who you are
It’s hard to love with a heart full of scars
I won’t feed into your dark
I’ll keep loving with a heart full of scars
(Heart full of scars)
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)
Done with doubt and overthinking
Wait for it to sink in
I’m enough
Sick of try’na to be your perfect
The pain is never worth it
Never was
Learn to say f*** it, take my time
Life’s a bitch but I’ll make it mine
Make it, make it, make it mine
Learn to take it as a sign
If you don’t like me, get in line
You won’t break me, break me with your lies
Sometimes you bleed for who you are
It’s hard to love with a heart full of scars
I won’t feed into your dark
I’ll keep loving with a heart full of scars
(Heart full of scars)
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)

 

Favourite line: “I won’t feed into your dark, I’ll keep on loving with a heart full of scars.”

Listen when: you need a pep up after someone gives you a hard time about your illness (even if it’s you)

3) Full of Grace, by Sarah McLachlan

Darling of the late 90s, Sarah McLachlan specialises in heartbroken, wistful songs. Full of Grace probably isn’t about endometriosis, but it perfectly captures the devastating impact endo can have on relationships.

The winter here’s cold and bitter
It’s chilled us to the bone
We haven’t seen the sun for weeks
To long too far from home
I feel just like I’m sinking
And I claw for solid ground
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go
If all of the strength and all of the courage
Come and lift me from this place
I know I could love you much better than this
Full of grace
Full of grace
My love
So it’s better this way, I said
Having seen this place before
Where everything we said and did
Hurts us all the more
Its just that we stayed, too long
In the same old sickly skin
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go
If all of the strength
And all of the courage
Come and lift me from this place
I know I could love you much better than this
Full of grace
Full of grace
My love

Favourite line: “I know I could love you much better than this.”

Listen when: you are sad about your relationship and want to wallow a bit (may make you sadder)

4) Where My Heart Will Take Me, Russell Watson

Like most people who know this song, I first heard it in the title sequence for Star Trek: Enterprise (a hugely underrated series, in my humble opinion).  It is very different from the title sequence of any other Star Trek, but I love it.  The sequence itself is a tribute to human innovation and our explorer’s spirit (as is the fan-made version above), but that’s a story for another day.  This is about the song.  It’s a song that always fills me with hope, courage to continue, and makes me think that maybe something better is just around the corner.  It inspires me to keep going.  It’s just very positive.

The original title sequence was a very truncated version of the song – the one I’ve put here is the full version.

It’s been a long road
Getting from there to here
It’s been a long time
But my time is finally near
And I can feel the change in the wind right now
Nothing’s in my way
And they’re not gonna hold me down no more
No, they’re not gonna hold me down
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith
I’ve got faith, faith of the heart
It’s been a long night
Trying to find my way
Been through the darkness
Now I finally have my day
And I will see my dream come alive at last
I will touch the sky
And they’re not gonna hold me down no more
No, they’re not gonna change my mind
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, faith of the heart
I’ve known the wind so cold, I’ve seen the darkest days
But now the winds I feel, are only winds of change
I’ve been through the fire and I’ve been through the rain
But I’ll be fine
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got strength of the soul
No one’s gonna bend or break me
I can reach any star
I’ve got faith
I’ve got faith, faith of the heart
It’s been a long road

My favourite line: “I’ve got faith to believe I can do anything”

Listen when: You need someone to believe in you

5) Healing Incantation, sung by Mandy Moore in Tangled

I’m a big fan of Disney, and Tangled is, if not my favourite, definitely near the top of the list for me.  It’s so pretty!  Flynn is so funny!  Gothel is so wicked!  Rapnuzel’s hair!  The lanterns!  I love it.

Anyway, this song really, really resonates with me.  When she sings it, I think along with it like a prayer.

Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine
Heal what has been hurt
Change the Fates’ design
Save what has been lost
Bring back what once was mine
What once was mine

Favourite line: “Bring back what once was mine”

Listen when: You really, desperately want healing

 

The Financial Impact of Endometriosis

Last year, the SBS programme Insight did a segment on endometriosis, estimating that it costs Australia at least $7.7 billion per year.  Our problem uteruses (uteri?) are bad for the economy.

The impact at an individual level, though, is arguably far more devastating.  Not in dollar amounts, perhaps – the idea that I would ever lose out on $7.7 billion dollars is estimating just a smidge high – but in terms of what it costs us as a percentage of our expenses.  Now, as another financial year winds to a close, seems a perfect time to discuss that.

(I want to apologise if I’m slightly incoherent.  I have another cold and I’m muddle-headed, dizzy, nauseated and slightly rambly, and my hands keeps trembling so I’m making some exciting typos.)

I don’t have super statistics about what endometriosis costs each sufferer.  I can only really talk about how it effects me, and the anecdotes I hear from others in the community who mention missing work, having to quit jobs, etc.

For me, missing work is by far the biggest impact.  I burn through any paid sick leave I have extremely quickly.  If it isn’t endo pain, it’s an infection or illness because my overburdened immune system can’t stand up to even the most pathetic germs.    That means that on days I don’t work, I don’t get paid.  Currently, my Prostap injection has failed me, and I’m home sick yet again because I can barely stand up and I’m so swollen that clothes actually hurt.  Also, the abovementioned cold.  I’ve made it to work one day this week.  That means I’m looking at another pay cycle at effectively half pay.

Of course, for sufferers who can’t work or can only work part-time or in casual roles, the financial impact is even worse.  I’m very lucky to have a good job with a good wage.  Many people can’t say the same.  Some have the fight of their lives to try and get the Disability Support Pension, which is not much, and have to live off Newstart in the meantime, which I understand is considerably less and puts you below the poverty line.

Regardless of whether I get paid or not, the cost of my Prostap is $358 every six weeks.  I’m fortunate enough to have private health insurance, so I get $100 back.  (It’s worth noting that Prostap is on the PBS if you have prostate cancer, so it will only cost $48 then.  If you have endo, no PBS benefits for you).  Add to that the cost of the hormone replacement therapy, which is $50-$100 monthly depending on the pharmacy.  I have actually stopped taking it because I didn’t find it that helpful, but it was an additional cost for several months.

Then, of course, there is the cost of surgery.  If you pay privately, you are looking at thousands.  If you go on the public waiting list, you could be waiting over a year depending where in Australia you are – more time with more pain and therefore more lost income and more money spent on pain management.

In between surgeries, there are multiple appointments with doctors and specialists.  Bulk billing doctors are a treasure, but if you can’t get those and don’t have a healthcare card, it’s usually at least $40-$50 per visit after the Medicare rebate.  If you need to keep going to the doctor to get medical certificates, new prescriptions or things like injections (such as Prostap or Zoladex) that adds up very quickly.  I’ve put off doctor’s visits and even buying medications before because of the cost.

Tax time is generally the only time you get a break.  My absences usually result in me being overtaxed and getting a bit back at tax time, but that’s one lump sum a year.  If I get anything back this year, it will be going straight to paying off some debt, and anything left over I will spend on wild items like moisturiser, because I’m currently scraping dregs out of jars rather than spending out on something like that that I view as a luxury, even though my face might crack and fall off without it.

I do want to finish on a slightly more positive note, though.  These are some methods I have used to try and minimise the impact on my savings.  They won’t work for everyone – you have to a) have savings, and b) have enough to put into them – and I’m by no means a financial planner, so please don’t take them as gospel.  I acknowledge my privilege here in that I am relatively well-off, and I beg you not to try and do things you can’t afford because of the idea that if you aren’t saving you’re a terrible adult.  If you can’t afford it, you can’t afford it.

1)  I budget by percentages and priorities, not dollar amounts

I carefully budget what my pay will go towards.  However, because I can’t guarantee I’ll be getting the same amount each week, I allocate percentages rather than figures.  If I say I have to put $500 towards savings a week (a pipe dream even at full pay) then I’m going to be struggling when I need to pay for petrol and groceries but only got paid $600.

My biggest percentage goes towards the mortgage, with smaller percentages for my savings account (to be touched only as a last resort), my emergency account (to be drained before I touch my savings but only if I have nothing left in my spending account), and charity (I can’t engage in much else in the way of service or activism, and giving to charity is a vital part of helping me feel like I’m making a difference despite that, so it’s non-negotiable).  I budget a particular percentage for paying off debt, but since it is to my parents and they are Very Nice People they are happy for me to not repay them if something else comes up like a vet bill (thanks Max) or unexpected medication or a small pay, so I have a little leeway that fortnight.

2) I quarantine my savings

As described above, I have two savings accounts – one for actual savings, which gives me a higher interest rate as long as I make regular deposits and don’t remove money from it, and one for emergencies, which has lower interest but allows me to remove money as needed.  I top both up at each pay with the same amount, but will always take from my emergency account first.  If I don’t have to take from it, great, I’ll earn more interest than I would with the money in my spending account, but if I do, it’s there and not being spent on other stuff.

I have absolutely got to the point before where I’ve blasted through my spending account and my emergency account (usually when big bills coincide with big medical issues) and touched my savings before, but this helps minimise the chances of that happening.

Of course, if you don’t have the income to split like this, this may be a terrible idea.  If I get paid a really small amount, I will skip putting stuff in the emergency account and put it in savings instead.  If I get paid even less than that, neither account gets a dollar.  You’ve got to be flexible with any system and put the money where it needs to go.

3)  I pay attention to my super

I was lucky enough to attend a financial planning seminar for women in law last year, and one thing that was emphasised is that women, particularly young women, don’t pay enough attention to their super.  One the poorest demographics in Australia currently are old women, who often have very little or no super and who have not taken an interest (or not been allowed to take an interest) in their own financial matters.  You should always be in involved in your own finances.

In terms of super, the advice given was this – if you are with a solid super fund, which most industry funds tend to be, and you are many years away from retirement age, don’t be afraid to put some of your money (not all!) in the higher risk option for your super fund.  The risk is relatively low, because it isn’t all your money and you are many years away from needing it, and the payoff can be high.  As you get older, move it all into lower risk options.  This will hopefully maximise the amount you get at retirement in a way that doesn’t expose you to unnecessary risk.

I stress that this was advice given to me by financial planners, not something I’m just saying.  It is entirely at your own risk if you do this and I’m not personally advising it (or advising against it).  It is something I do, however, because I want a good retirement to make up for the difficulties I’m having now.  That’s when I imagine I’ll actually have the health to do fun stuff, and I’d like to have the wealth to back it up.  Don’t sue me if doing this fails for you.

4)  I do my best not to feel guilty when I can’t meet my financial goals

So, this one is no use as a savings tip, but it is super important.  Financial pressures are real and they suck.  Often we have to give up on things we want and abandon or delay savings goals in order to pay the bills or buy food.  I avoid articles about “how I paid off all my student debt and owned seventeen houses by the time I was 25!” because they are usually a) written by someone with no idea how privileged they are and b) make me feel bad, not motivated.  You really can only do your best.

 

How has endo affected your finances?  How do you do your best to combat it?  Let me know in the comments!

 

Lifeline’s Response

A few weeks ago I wrote a letter to Lifeline about one of their Australian ads (you can read it here).  They have now responded.

The email reads:

“Thank you for providing your feedback about the Lifeline HOPE billboards.  I am so sorry that they have made you feel the way they do, this is certainly not our intention.  We had aimed to provide a strong message of hope, which is the undercurrent of all our communication campaigns.  To date, I have received plenty of positive feedback about this campaign, your feedback is the first negative, but it has weighed on me heavily. Thank you for taking the time.

The intention behind the poster was that people would see the ad and be encouraged to hold on with HOPE for whatever the reason may be that they need it.  In doing so, I had hoped to encourage a more compassionate Australia. For those in chronic pain, I had hoped to impart hope in the continuing advancement in scientific discovery and the dedicated medical teams who are working in the field. The furthest thing from my intention is to cause anyone harm or to experience isolation.

Ella, this ad placement has been provided pro bono, so I am unable to change where it is placed or how often.  I can give you the undertaking though that the next iteration of  posters I am given the opportunity to post I will ensure there is a different hopeful message.

I am sorry for the distress this has caused you, I hope my response will give you some solace.

Kind regards

Ina”

Ina is the National Manager of Communications and Public Affairs for Lifeline.

Whilst I still think the ad is deeply insensitive and demonstrates a lack of thought, and I don’t buy the “continuing advancement in scientific discovery” thing (anyone with a chronic illness knows that waiting for medical advances is about as hopeful as waiting for a tsunami in the Gobi Desert), I am gratified to have received a reply.  I also very much appreciate the apology.  I do hope that they bear the message in mind and give thought to those of us with chronic pain in future ad campaigns.

I strongly encourage anyone with the spoons to call out ableism or exclusion when they see it.  People without intimate experience of disability or chronic pain don’t even think to double check on whether their language or actions are inclusive – goodness knows I rarely did prior to actually having endometriosis and working to educate myself.  Every time we point it out is hopefully a time the other person goes away to think about it and takes the time to educate themselves and change their behaviour in future, and hopefully become an advocate for us as well.

Keep on keeping on, endo warriors.

Sorry for Being a Slacker

Hello, gentle reader.  I apologise for the lack of posts of late.  Like most people with a compromised immune system during flu season, I have managed to acquire myself my very own pet illness.

Thankfully, in this case, it isn’t flu.  It was a cold, and then it turned into another sinus infection, and it has just stayed that way for two weeks.  I anticipate that I will get at least one more before we kiss August goodbye, and I would not be surprised if I get multiple between now and then.

The super fun part of the infection, you’ll be surprised to learn, has not been the horrifically sore, swollen throat, the aching in my face that feels like goblins are trying to shove my eyes out of my sockets, or even the crushing exhaustion (I’m kind of used to that anyway).  It hasn’t even been the joint aches.

It’s been yet another disappointing encounter with a doctor.

I used to see this wonderful doctor at my local bulk-billing place who has consistently fixed every problem I have taken to him.  I trust him deeply.  Unfortunately, he only sees patients on a walk-in basis now, and I needed to actually book in.  I saw one doctor who is quite nice and who gave me the good antibiotics, but a week later I was still sick and getting worse so I went and saw another dude because the first doctor wasn’t available.

That doctor prescribed me weaker antibiotics, told me to use a treatment my favourite doctor had specifically told me was not beneficial and was possibly harmful, and then:-

  1. Said, “You don’t want a hysterectomy, we won’t do that for you” (I do want one);
  2. Told me there’s no need to go to the UK for a doctor because we have plenty of good ones here;
  3. Recommended a doctor who previously told me I couldn’t possibly have endometriosis so soon after my first surgery (I did);
  4. Told me that if my Australian specialist had refused to perform TPPE (he didn’t even know what it was) that’s because the surgeon knew what was best for me;

and just generally did his best to make me feel guilty about taking my medical care into my own hands with absolutely no understanding of what it took to do so.  Ok, that’s unfair – he was trying to be thorough and ensure that I was seeing someone for my endo – but he was unintentionally extremely condescending and made me feel like I had to defend my choices to change doctors and go to the UK to get surgery I literally could not get in Australia.

It’s another lesson in “if you don’t know the full story, stop judging.”

Yesterday I got sick of the weaker antibiotics not working and my sickness continuing to worsen, so I went as a walk-in and saw my favourite doctor.  He gave me the good stuff again.

Thank goodness for the good doctors.  Boo to the bad ones.

Save These For Future Use, Part 1

Last week I shared some quotable quotes I found on Pinterest about life with chronic illness.  Visitors to my Pinterest board, however, will also see more than just funnies and sads.  I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself.  I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something.  Because this post is very long, I’ve split it into two groups of 5.

Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is.  Just skip the descriptions if you don’t need them.

1)  A pain scale we can all understand

Chronic Pain Scale

With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).

“10 – Unable to Move – I am in bed and can’t move due to my pain.  I need someone to take me to the emergency room to get help for my pain.

9 – Severe – My pain is all that I can think about.  I can barely talk or move because of the pain.

8 – Intense.  My pain is so severe that it is hard to think of anything else.  Talking and listening are difficult.

7 – Unmanageable.  I am in pain all the time.  It keeps me from doing most activities.

6 – Distressing – I think about my pain all of the time.  I give up many activities because of my pain.

5 – Distracting – I think about my pain most of the time.  I cannot do some of the activities I need to do each day because of the pain.

4 – Moderate – I am constantly aware of my pain but I can continue most activities.

3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.

2 – Mild – I have a low level of pain.  I am aware of my pain only when I pay attention to it.

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?”  My 10 is not the same as another person’s 10.  It doesn’t convey the actual effect of the pain on my body.  It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale.  And is the scale linear or logarithmic?  HOW DOES IT WORK?

Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own.  You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.

In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating.  Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5.  My face doesn’t crack, my posture doesn’t slump.  I carry that through to hospital, where I am quiet and calm externally even though I can barely think.  I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me.  I can fall asleep despite really bad pain, because pain is very exhausting.  I know that it consequently reads as me exaggerating when I say that my pain is an 8.  Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.

Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?

2) What being able to work really means

A tumblr thread that reads:

mmmyoursquid: |People love to talk about whether or not disabled people can work 

but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)

Dead silence.  Nobody cares.”

eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.  

Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

mmmyoursquid: “reblog bc the non activities thing seems really important words.”

I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person.  On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering.  Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it).  If I’m having a period of real wellness, I will join my husband in a daily dog walk.

Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries.  Basic household stuff.  If I want to have a shower or bath, I’m definitely not walking the dog.  The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards.  I tend to only socialise on long weekends or when I’m having a really, really good week.

I am lucky.  I have more “useable hours” than many people.  However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed.  It baffles me that other people use their after work hours for more than resting and watching Star Trek.  Health and vigour seem like wonderful things.  I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day.  Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture.  The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.

3) Changed lives

Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it.  I was walking a specific path that got 130% re-routed when I got sick.  And it feels like I’m in this bizarre, alternate, half baked version of my real life.  And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led.  Who would I have been?  What could I have been?  We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”

I think this is a really good way of explaining to people why chronic illness makes you sad.  You are in mourning for the person you could have been, or thought you were going to be.  I think it can be a tricky concept to explain.

I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong.  It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year.  Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy.  Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take.  Would I be making a name for myself as a good advocate?  Would children still be a distant one-day?  Would I have been able to travel the world like my husband and I wanted?

4) The in-between

it sucks too because nobody believes you. you are so alone and you have no peace no relief. At some point you even consider  suicide as your way to peace.

Image reads: “A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community.  It’s a place some of us get stuck in – the in between.  A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world.  You almost faint but you don’t.  You’re always in pain it’s relatively tolerable.  You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time.  Your heart rate is too high to be normal but not high enough to be critical.  Your BP is low but not THAT low.  You try to find answers but seem relatively okay to doctors so they don’t want to run more tests.  You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”  

This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything.  This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with.  This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.

I’ve been in the in-between – I live there, I think – and it just sucks.

5) It is more than pain

Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.  

Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this?  I think this little post does it pretty well.  I don’t think people get that it is sooo much more than just pain.  I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function.  Fatigue is the biggest one.  I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late.  I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being.  I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed.  Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas.  I couldn’t go to court or see clients, of course.

Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it.  In the meantime, I think this little tumblr post does a very good job.

 

I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.

Stay tuned for Part 2.