The Lie of Giving Up and Falling Apart.

"Giving up is easy" says the meme up above.

"Falling apart" is bad.

"True strength" is only when you don't give up or fall apart.

This is a clear and persistent belief in our society.

Having fallen apart on more than one occasion I am clearly weak. I have failed the true strength test.

And yet here I am still kicking on. Loser that I am.

I understand why people post memes like this. I understand that for some they are indeed inspirational. But the simplistic inspirational narrative in these kind of memes irritate the hell out of me.

What exactly is wrong with falling apart? And what exactly constitutes falling apart?

There are times in life that things reach crisis point and you fall apart. You can't cope. You cry and withdraw. Shake your fists at the sky and scream about the injustice of life. There are times when it feels like the tide of human existence is going to swamp you and all you can do is feel despair. You aren't falling apart you are experiencing real emotions and behavioural reactions to a stressful life.

When I see memes like the one above I think of the countless emails I receive from fellow patients who are overwhelmed not only by their physical symptoms and social and psychological stressors associated with that, but also the overwhelming sense that they are failing or doing illness wrong because they can't hold it together.

Illness is stress. Chronic illness often means that stress will never fully go away. People aren't falling apart when their stress levels reach critical levels. They aren't giving up when they voice that stress and can't hold it all together. They are human beings, experiencing real and valid emotions to a prolonged highly stressful situation. We should not be jumping on them with judgements about giving up and the evil of falling apart, but offering them support, a place to voice their fears and sadness, and direction to appropriate mental health groups to help them navigate the complex and stressful world of chronic illness.

Should we add yet another burden to the list, pretend it's all okay and hold it all together, at least in the public view?

As  I've written many times on this blog, giving voice to the negative aspects of illness, not coping every second of every day, and admitting you are overwhelmed is not giving up. In a way it requires far more courage to admit the truth of falling apart in face of a society that values the perfect presentation of a person with illness who always "holds it together."

Inspirational sick person narratives are rife.

Flawed, complex sick person narratives are jumped on and wiped away with relentless regularity.

Admit a flaw and you are giving up.

Admit that it's hard and you are giving up.

Admit you can't hold it all together all the time and you are giving up.

Giving up by admitting it's hard and it falls apart, isn't the easy option. A false face is the easy option. No one questions the perpetually,perky smile, I've got it all under control, narrative, because that's what the world wants to hear. To salve their own fears. Sometimes to salve our own.

If we truly want to promote mental health we need to move away from judgemental narratives about giving up and that falling apart is the worst thing you can do. If we want people to seek help we must be open about the times it all comes crashing down, and that we don't actually have to be the popular version of strong ALL the time.

I've fallen apart many times in my life, not just in the last nine years of illness. Because I am human, not some super woman. I have strength. A strength which is true to me, even if others can't see it.

And for every single person who sends me emails, or is sitting at home right now reading this who feels like they are falling apart, or are afraid others will judge them if they voice their struggle, please know you aren't abnormal, you aren't doing illness wrong, you are stuck in a shitty and incredible hard and stressful situation right now and responding in a totally human way, but there is help available and there are others out here in the ether who get it and understand.

There is strength in giving voice to the struggle.

Screw the lie of giving up and falling apart.

You are not alone.

Michelle

It's okay to ask for help.

Here are some starter services in Australia. Most countries will have similar programs.

Australian Psychological Society (has a find a psychologist function)
Kids Helpline
Headspace
Lifeline
Beyond Blue
Suicide Line

This may be one of my favourite First Aid Kit lines:

I always thought you'd be here

But shit gets fucked up and people just disappear

In the case of chronic illness shit gets fucked up and life is hard. We don't have to pretend it's all sunshine and lollipops. 

Inequalities in medication access: Ondansetron. AKA If you want to not vomit be prepared to pay with your left kidney and first born.

(source)

It's the wave first. The rolling wave of warmth. The clench in my abdomen. Foul saliva that fills the mouth. It passes for a second and I think I'm okay. I take another bite. And it hits again. Harder than last time. And gone. Play the rookie and believe that it's over. Momentary. Fleeting.  Hope. Delusion. That lovely little fantasy land where nausea doesn't exist. Nor vomit rising in my throat. The sweat that doesn't come thanks to anhidrosis but my body still tells me is there. Phantom sweat? The limb equivalent in a body that just as stubborn as it's resident, likes to pretend it's still like all the other kids. Place a little minty wafer on the tongue. Feel it dissolve. Let the hope be absorbed into the oral mucosa....

....Sitting in the loo down the alley way next to the cafe. Focus on the hole in the scuffed plasterboard and the wad of old dusty newspaper used to fill it. Try to read the words in the creases. Wave on wave hits and I am forced to put my head between my legs. Raise my head and it hits again. Open up my bag grab another wafer in it's little foil pack. This time. This one....

....Sitting in the car in the carpark waiting for my youngest to get out of the university open day. Spitting out a frantic “I'm going to vomit!” as my eldest looks on helpless. I've done too much. I know it. I knew it in the cafe and the specialist's room before. On the drive down and in the shower before we even left home. But what can you do? Life doesn't stop because you're ill, because your body forgets how to hold food. Another wafer. A last gasp....

....Four's the limit for the day and here I am on number three already. A three hour car trip awaits while I weigh up taking another tiny wafer or simply stapling a puke bag to my face....

Nausea is debilitating.

It affects eating.

Sitting up.

Walking.

Talking.

Simply getting through the day.

I have tried home remedies. A plethora of options from the chemist. And many prescription medications.

It is a daily symptom. A combination of a malfunctioning digestive system and periodic blood pressure issues. Dehydration adds it's own joy to the mix and suddenly even the thought of food, or water, has me running for the loo or grabbing a puke bag.

Eating is now a chore. I feel sick before I eat, while I eat and after I eat. Vomit and I meet up on a regular basis.

I am losing weight. Far more than I should. I am unable to absorb my food properly so that the small amount I force in still doesn't give me all the nutrition or calories I require. Even when I can get it to stay down, I still fight to maintain a weight that wont budge from the underweight range.

I have dealt with this particular issue for 9 years now.

After much trial and error I have finally found a drug that can help. It takes the edge off and allows me to eat a little more and have a better chance of keeping it in.

Ondansetron.

I am not alone in loving this little wafer. For many in the Dysautonomia and Gastroparesis communities it is the only drug that even comes close to taking the edge off the nausea.

The only problem? Cost.

Ondansetron is subsidised on the Pharmaceutical Benefits Scheme (PBS) for the following:

Management of nausea and vomiting associated with radiotherapy being used to treat malignancy.

Management of nausea and vomiting associated with cytotoxic chemotherapy being used in the treatment of malignancy which occurs within 48 hours of chemotherapy administration (May be extended for up to 7 days.)

For patients with other conditions also undergoing chemotherapy there is no subsidy.

For those with unremitting nausea due to others conditions such as Gastroparesis or Dysautonomia there is no subsidy. Not even women experiencing Hyperemesis Gravidarum during pregnancy can access the subsidy.

This is what a 4mg $3 wafer of Ondansetron looks like.

(Green jelly bean for size comparison. Green jelly bean promptly eaten after photo taken.)

On a bad day up to 4 can be taken or $12 a day, or $84 a bad week.

My dietician suggested I take it before each of 6 small meals a day or $18 a day, or $126 a bad week. (Luckily, I can't stomach 6 small meals a day)

It can only be bought in 10 packs. Or 2 ½ days worth if you're in a bad patch. Unless you have a doctor who will give you 5 repeats on the script. Even then you can't stock up. One repeat at a time.

So patients put up with nausea and vomiting. Lose weight and end up malnourished. Relief and potential functioning is put aside thanks to financial constraints.

Loopholes and less legal means are employed by some desperate patients. I am ecstatic when I present at ED and as part of my overall stabilisation, a shot of Ondansetron is injected into my cannula. One less dose I have to pay for.

By comparison, in New Zealand fellow patients pay roughly $5 for 50 of the same drug at 4mg and roughly $6 for 50 0f the 8mg version, and some even less. It is also routinely prescribed in the US under the name Zofran, yet here we continue to struggle with access.

For most of us this is only one out of many prescription medications we take. The financial burden of management always at the forefront of our minds. (Between over the counter, supplements, and prescription medications I take 14 different medications. 11 every day. The other 3 are break through medications. Plus a medical grade food supplement drink when I cannot stomach solids at all.) Costs and symptom/illness management must be weighed up. Frequently, even for patients who are vomiting multiple times a day, the financial burden is too great. Leading to poor illness management and more frequent ED and hospital admissions. For a government who espouses a need to cut costs, a costly ED or hospital stay and increased disability and care needs, hardly equates to the best financial option when weighed across subsidising a medication like Ondansetron for patients who have unsuccessfully trialed multiple other antiemetics and antinauseants.

I, like many others, take Ondansetron sparingly. Quality of life is reduced. Ability to function is reduced. But the cost, which as it is not on the PBS other than the situations mentioned above, cannot count towards the PBS Safety Net. A double hit for patients already struggling. A subsidised script is also not covered by Health Care Card, for those on pensions. A small change to the access criteria would allow Australian residents to access a very effective medication option that our fellow patients access with comparative ease overseas.

With no cure in sight and treatment only in the form of symptom management and off label prescribing, this is a burden both financially and functionally, that patients should not have to bear. Ondansetron is not a drug for all patients and like all medications should only be prescribed based on individual need. But it is hard to understand why the exact same disabling symptom, nausea and vomiting that doesn't respond to other medical options, should only be subsidised if you meet two very specific criteria. I don't begrudge those who qualify a single mg, but I do want a word with the bureaucrats who make the decisions. I am tired, exhausted and malnourished. And my tolerance for health care bureaucracy and the taste of bile is waning at an accelerated rate. 

….So I lay down in the car for the trip home. I kept swallowing down the vomit and riding out the waves of heat and phantom sweat. Breathing through the worst of it. Willing my body to quiescence. A fourth wafer the bridge too far financially. Ride it out. Hold the puke bag. Prepare the family that we may have to stop suddenly. “Now” means NOW. Throw up on the side of the road. In the rancid loo at the petrol station where the doors don't lock and the floor is always wet, or the one where the lights don't work and plastic seats are met with a combination of hope and desperation. So familiar. Too familiar.

Michelle

*I have recently discovered that if your doctor writes a prescription for 30 wafers at a time it saves you a considerable amount ie it comes down to about $2 a wafer rather than $3. Equalling about a $30 saving overall, compared to the usual $30 for 10.

**Then if you have private insurance most will cover the gap in costs from the standard PBS price (around $37) which brings the price down to about $1. But like everything there is usually a limit to how much you can claim.

***Ondansetron is only one example of similar discrepancies in access to medications for the same symptom but different aetiology affecting Dysautonomia patients in Australia. For example, Octreotide is subsidised for 3 set criteria. Cost outside of those criteria is quoted as approximately $4,000 a month, making it effectively inaccessible. But the whole vomit/nausea mess is making access to Ondansetron very salient at present.

***8UPDATE: my local member has written to the Health Minister Susan Ley on my behalf. Will let you know when I hear more. Thank you to Darren Chester MP for taking the time to read my letter, this post and contacting the Health Minister. 

You might also want to check out:

The Price of Health
Pukefest 2011: The Most Craptastic Event of the Year.
Accessing IV Saline: A lesson in futility.
Six Months in Chronic Illness

Goyte's song Thanks for Your Time, about the ridiculousness of automated bureaucracy and phone cues just seems appropriate.

You have been placed in a queue

But your call is valuable

It's very valuable

We hope this doesn't inconvenience you

Because you're valuable

You're so very valuable!