You can’t write a script for empathy

By Penny Shipway

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Me with my support team

Do you remember when Sudafed contained pseudoephedrine and anyone who dared ask for it had to produce a driver’s licence?

Even my mother who wears pressed shirts and a full face of make-up every day would get drilled by the pharmacist with a raised eyebrow.

A friend actually told me you can still get the “real” Sudafed but it takes a script from the doctor and you have to pick it up the next day – probably with an Armaguard truck and two guards.

It’s true that getting over-the-counter pharmaceuticals can be an awkward task.

But imagine what it’s like trying to get the really strong stuff – weekly. After five years.

Let’s call it “pain shaming”.

The other day I cried after ringing the doctor.

Well, that’s not entirely correct.

You see, because I am on antidepressants it’s impossible for me to cry so my eyes were wet, and in a wave of fury I rang my mother. This is my version of crying.

She answered FaceTime with her usual big smile and I could barely talk.

She knew something was wrong.

I told her I had just made that dreaded call to the surgery for another script.

The stuff the government prescribes for “severe and disabling pain” (their own words) but that ultimately makes us feel like worthless human beings.

The chirpy receptionist had sized me up and down yet again and today was the wrong day.

My period had hit me like a sledgehammer and the dogs next door were getting themselves into a pretzel over a full moon which was part of some crazy, retrograde cosmic twist.

Yep, I was pissed.

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We are “normal”, promise!

“It’s only been a few days since your last script”, Chirpy Receptionist had told me with hesitation, “The 25th actually, almost a week, but not quite.”

Through gritted teeth and desperate composure I had to reply: “I have had chronic pain for five years; the doctor has written this for me before.”

My heart was now beating so low in my chest I felt like I was going to birth it right then while Chirpy Receptionist talked me through heart labour.

After I had hung up I imagined her sitting there in her comfy office chair with the heating on, just waiting to go home to the smells of her slow cooker.

‘Probably lamb shanks,’ I had thought.

Meanwhile for dinner at my house I’d organised braised nothing with a side of not much else.

“I will be sitting up all night writing stories to make a crap amount of money to pay for our food with a back that feels like a 74-year-old, but I’m only 34!” I wailed to Mum.

Poor Mum, she lives away and feels helpless, so I don’t like to tell her too much about the reality of my day to day.

But on this day I’d had enough.

I told Mum about the enlarged eyes that the women behind the counter get when they realise just how much medication I’m actually taking, and that I’m still alive to tell the tale.

I told her that even my doctor was suss and I somehow now had a guilty conscience every time I saw him.

Once a script went missing and all hell broke loose.

There were phone calls to some government ‘person in the sky’ who was trying desperately to retrace every step the script had made.

After 20 minutes of a “CSI” investigation it was revealed that my chemist had not given me the required amount.

The tension that was released from the air was palpable, and now my doctor was free from having to help the Federal Police shove my kicking legs into the back of a paddy wagon.

I was suddenly back to being “nice mummy with a bob” who just needed something for her chronic pain.

Back to being that well-spoken journalist, with a sensible satchel and nicely-dressed kids.

But I get it.

I know it’s incredibly difficult differentiating between a functioning drug addict and someone with an invisible illness such as chronic pain.

But I am 1 in 5 Australian adults in pain and many of us who require medication deal with this relentless conjecture on a daily basis.

I do not take drugs for shits and giggles.

OK I will admit I once though it was hilarious to score drugs at the back of night clubs while living in London when I was 21 (and it kinda was), but right now I couldn’t be more contrary to that person.

I’m trialling a vegan diet and I save alcohol for special occasions.

I practice yoga and meditation, and I’m exploring a spiritual path. I even like crystals and salt lamps!

Why?

Because I have had to stare a lifetime of pain square in the face and the only way I can deal with that is to do the best I can do with what I have left.

Isn’t it funny that we have chaplains working tirelessly to stamp out bullying in the schoolyard, yet in the workplace it’s expected for us to just harden up?

When I took my toddlers to get their vaccinations I watched them get jelly beans as nurses jumped around in front of them blowing bubbles.

But when you are an adult getting your annual prick you are told to look away and cough.

Why does the kids’ hospital ward always have colourful walls with adult entertainers making bulldozers and Disney castles out of balloons?

Where’s my Patch Adams?

We give children love, care and laughter when they are unhappy.

Throw them parties, give them cake.

But those of us adulting or dealing with sicknesses or diseases just have to get on with it.

There are certainly no school chaplains asking us if we are OK.

No goodie bag for the drive home after a colonoscopy.

Empathy is not something you can write a script for.

It comes from your husband bringing you a cuppa in the morning when he knows you are at your sorest; a friend who shares her lunch break with you because she knows you have a lot going on; or a neighbour who offers you their stand-up desk to borrow so you can see if it will be good for your back.

We’re not asking for much.

Just some acknowledgement that we’re going through a shitty time.

And less Nancy-Drew-Sherlock-Holmes-eyeballing for the majority of us doing the right thing.

Oh, and a letter from the local member saying ‘how can I help?’ with a voucher for a free neck massage thrown in for good measure – that would be fantastic.

And maybe a lollipop, too.

That would be nice.

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At a birthday party recently with my daughters Daisy (right) and Lola

 

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21 thoughts on “You can’t write a script for empathy

  1. Thank you so so much. This is my story each month on my pain meds. Im lying here crying because you understand how much of a criminal we are treated as when we get our meds. Thank you so much for sharing.

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    1. Hey Anna, it totally feels like we are being treated like a criminal doesn’t it? There’s no empathy whatsoever for those of us suffering such a terrible time. I’m sorry you too are being treated that way. It totally sux xx

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  2. Great piece really well written. I’ve lived with pain every day since doing my back at work and was on quite a lot of morphine for a while but decided to kick it when it stopped working and the doctors wanted to just give me stronger and stronger meds. I was never pain free anyway and decided for the lower pain plus the drugs side effects I didn’t like the trade off. I’ve been trying to find legitimate work from home to try help my wife but haven’t found anything yet. I now have kidney failure on top of my depression, anxiety (isn’t that fun?) and chronic pain and have to attend dialysis every two days. I’m hoping now Centrelink will finally give me disability which they have denied me for the last couple years because to qualify with back pain now you have to not be able to walk at all or move your neck such has the crackdown on false claims impacted on those of us who really need help. Some days I can go all day with a pain level of around 4/5 and oh are those days heavenly but I have to spend most of them in bed to stay that low. Other days a simple stretch to pick up something or pull up my doona can throw my back up and I can’t leave my bed for days which now means a call for an ambulance to take me to hospital because I can’t miss dialysis. I don’t know why I’m saying all this… Think your article just gave me a place to vent. Anyway thanks for sharing your story!

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    1. Thanks Anthony for sharing… I really am sorry to hear you are going through all that. Sounds really tough. I’m currently considering if I should come off my drugs cos they are going up and up and not working at all. Isn’t it crazy how hard it is to get any help from the govt? It’s a shame so many people ruin it for everyone. Do you do Pilates or yoga or just stretching? I need to do more soft slow exercises. Take care of yourself!!

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  3. I know this will sound bad but it makes me feel a little better knowing there are others out there that also experience these kind of issues.
    I remember one time when the girl at the chemist asked me what drug I was addicted to when I went to pick up my pain meds.
    Or the other time when the Drs receptionist smiled whilst asking loudly if I was sure I wasn’t selling the stuff in a packed waiting room. (And I was already having a bad day) My Dad was with me as he was driving me that day and helping me to get around. He flew off the handle at her she ended up in tears but only because she didn’t understand what she had done wrong!

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  4. Great article Penny! I too am a chronic pain sufferer for the last 16 years after being a pedestrian run over in a hit and run (well, technically the guy did stop-but only to drag me out of the way so he could drive off and leave me with a broken neck, cheek, nose, jaw, shoulder, arm, 8 ribs, leg, and 2 punctured lungs. And no, the police never got him). I’ve experienced all too many times the ignorance of health care workers from silly receptionists to emergency dept doctors telling me “I’ll give you one shot of morphine and I don’t want to see your face here again”. Or being left in the waiting room for two days (they were hoping I’d give up and go elsewhere). I remember asking a nurse if she could help me wash my hair as I’d been in hospital for six days and it was filthy to which she replied that my pain couldn’t be that bad if I was worried about how my hair looked. It’s hard enough that we have to deal with trying to just get through every day, but the fear and shame of being dependent on strong opiates and other affiliated meds as well as the fact the most of society is still ignorant about the nature of chronic pain can send you over the edge sometimes, hello depression and anxiety! It took ten years for my parents to finally gain some understanding that my neck pain wasnt just a bit of a stiff neck from time to time and that I wasn’t a hypochondriac trying to get out of working full time. Thankfully I have a very understanding husband and child whom take great care of me and manage to keep things going when I’m in hospital.
    On the bright side, with so many Australians now unfortunately suffering chronic pain, things are starting to get better. NSW Health have a great outpatient pain service and Victoria is up there too. Sadly Queensland is behind the eight ball but there is a slow shift starting to occur (blame the Newman Govt for cutting funding to all public pain service, especially outpatient). Presenting to hospital with chronic pain is a roll of the dice, if you’re lucky you will be seen by a doctor who has some idea and will treat you with the dignity and respect we all deserve, and realise that because we are on these meds all the time that we have a tolerance and require bigger doses than your average Joe.
    For anyone interested in trying to empower themselves and find out about what’s happening with pain in Australia there are a couple of great websites: pain Australia is a great site which will link you to chronic pain Australia.
    The last thing I want to say to all you fellow pain survivors is – keep going, you are still a valuable human being! Keep looking and keep trying whatever you think is right for you. Pain is such a subjective illness that has traditionally been treated with a very objective regime but don’t just accept what is offered, get out there and find what works for you. Exercise is a must, not just for your physical needs but your cognitive and emotional ones. Socialise when you can, and stop worrying about the fact that you sometimes have to opt out! Take control back of your life. The pain will always be there but it doesn’t mean you can’t make the most of what you have. Stay strong people, I wish the best for us all! (Sorry about the really long post!)

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    1. Hey Kristin thanks for your knowledgable response! That’s great you guys are having some success down there. I really hope it does trickle in up here soon! The emergency Dept near me is shocking and left me sitting for hours only to turn me away. I even called the ambulance the other day and she told me “we can’t take you, chronic pain is not considered an emergency.” Thankfully my pain specialist is putting me in the Private hosp on Monday but getting by in the meantime in stupid amounts of pain is pure torture!! I am definitely getting better at accepting what I have though and it’s become a very spiritual journey for me. I am hoping to heal and help more people by getting another voice out there because it sounds like so many more poor people are suffering… Breaks my heart xxx

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  5. Hey Penny,
    Saw your post on Constance Halls site and after reading the article above you are now my favorite person ever. (Apart from my daughter, maybe) I was diagnosed with Crohn’s disease not long after my little girl was born and, three years on, on a concoction of medication and still suffering. Reading your posts I teared up Because even though I have an amazing support network, I feel alone at times. I’m
    Sorry you’re in so much pain, but thank you for making my heart feel nice ❤️❤️

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  6. Hi Penny.
    So great to read about someone else’s pain journey, well not great. … you know what I mean! I was diagnosed with DISH at 33, 5 years ago now. I have so many left over meds from my trial and error days in the beginning, my pantry looks like a pharmacy. I have an 8 year old boy and a 3 year old girl and i tell you what, I feel that guilt when I either go for a script or get it filled with my kids in tow. I seriously get the omg she is cooked from these drugs and looking after children look. …….. most people with DISH are over 50 with grown children so it’s nice to meet/read someone my age.

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  7. I don’t experience chronic pain but o do struggle with mental health issues.. Anxiety, insomnia and depression. Just this last week I was in tears because the pharmacist took in upon herself to accuse me of being a junky???
    Ariella

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  8. In a similar vein, I take Low Dose Naltrexone for chronic pain and whacked out autoimmune stuff. In much higher doses it is used to treat alcoholism…but the chemist compounding it probably doesn’t know that (it’s only been used clinically in this way for a short time). The looks I get when I stroll in with my script. Ironically, my medical condition has precluded me from drinking alcohol for well over 13 years. I just about walked out on an unfamiliar GP who I went to for a repeat script. He looked at my file and looked at me and said “So, we’re treating you for alcoholism?”. No dickhead, look at the dose. I am as far from a party girl as you could get.

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    1. I hate the looks!! I have also stopped drinking alcohol. It just makes me tired and obviously I don’t want to mix it with all my meds. Judgy Mcjudgies are probably drinking lots of alcohol on the weekends which is way worse for your body than the painkillers we take – as my GP told me!

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  9. I have endometriosis which means I’m in pain every day, and about half the month completely crippled with labour type pains.

    I am on opiates daily, and have been for years. I have also suffered so much abuse from doctors and staff who are very quick to slap labels on you, or cry ‘drug addict’ because the chemist has messed up your script. I have been shamed, asked if I knew the street value of my pills, threatened that they will immediately cease giving me meds if my script goes missing etc etc. I don’t even want to be on these drugs!!

    Thank you so much for understanding xxx

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    1. I know! My friends joke all the time that I’m a druggy and at first it was funny but if they only knew what we really went through they wouldn’t joke about it. It’s far from the truth. We can’t hardly DO anything! I wish I could go out partying! More fun that enduring a life of chronic pain x

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  10. Oh penny thank you, I am sitting here with the watery eyes that refuse to let the tears go after having a really crappy night and morning where I have had to add yet more opiates to my pill cocktail just so I could make a coffee. Now my blood pressure is too high, my cholesterol is too high so another two scripts to the already far to big a pile at my chemist. My Crp levels are at an all time high of 16.5 but no cant see the surgeon that may be able to take away some of my pain for nearly 4 weeks, two more weeks till I see the rheumatologist who will yet again say the longer we leave the spinal surgery the better it will be, really are you in my body feeling what I do every day!!! I wish I could ring my mum but I haven’t been able to do that since June 1st when she passed away, I was feeling so very alone and isolated until I found your posts so thank you for helping me feel it’s ok to go stuff it all and just go back to bed at least until the bus drops the kids off because we don’t want the kids to see how bad I really am.

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  11. As I lay her in pain I am so grateful I came across your YouTube Penny. Thanks for sharing. It means allot that there are others out there. Addicts have allot to answer to. We suffer in the interim. As for some hospital staff they need to go back to school I think. Sometimes I hate the fact they hold opinions about us suffering from laggit conditions. So so glad I found others out there who have experienced all the same type of let downs and conditions. Thank you god.

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