Today’s NHBPM prompt is to climb upon my Health Activist Soapbox and get yelling, SO LISTEN UP!
It can be hard to member of society when living with severe chronic pain. I added the severe in there because there are so many different people living at different levels of pain and with different capabilities. Some of them are able to work. Some of them are able to drive without question. Some of them are able to function on most days, some of them can never get out of bed.
Chronic pain can present in so many different ways and the Australian Government does not have much in place to help people trying to navigate this difficult lifestyle.
I’m not writing this post for pity. Plenty of people live with chronic pain, in more dire circumstances than me and receive less help from family and friends. I am writing this post for them.
I am writing this post because in the effort to simply educate about CRPS, there isn’t often much room for discussion about the financial impacts of living with such a condition.
Living with Complex Regional Pain Syndrome is expensive.
There are the endless doctors appointments, the high costs of seeing specialists, the medication bills and the visits to manual therapists (feldenkrais, massage, osteopathy, chiropractic, acupuncture). Pain can present suddenly and, especially in the beginning, be incredibly confusing and ridiculously intense, so let’s not forget about the cost of a few trips to the ER and several hospital stays.
The medication itself can cost a bomb and a half. Many of the drugs that I was put on during my first few years with CRPS were not covered by the PBS. Some were approved for treating another condition, such as Epilepsy or Parkinson’s Disease (different nervous system malfunctions) but not chronic pain. This is because science hasn’t gathered enough evidence to prove their efficacy yet and chronic pain patients are treated like guinea pigs… “This drug might help, here, take a whole lot of it….at $80 a fortnight”.
At the time I was receiving Sickness Allowance or a Disability Pension the pharmaceutical benefit was $5.50 per month. Barely enough to buy a dose of Panadol.
Currently, I have to pay to see a GP every couple of weeks because I am not allowed to have repeat prescriptions for the one painkiller that I do take. I don’t need to be assessed every couple of weeks, but this is the hoop that the Australian Government forces me to jump through. Look at the crippled girl go, she’s just bounded right through there!
Therefore, added to the cost of the prescription is the cost of obtaining the prescription even when absolutely nothing has changed.
Because, you know, if I didn’t show up at the doctors every couple of weeks then I’m just a pain faking drug addict…
Some courses of treatment, such as ketamine (at the time that I had my infusion), are not available in the public health system in Australia. I had to spend thousands on private health insurance and allow my CRPS to progress for over twelve months after this was presented as my best option for recovery by my then doctor. I had to do this just to be allowed to go and pay for the treatment.
Health insurance never seems to actually cover much at all. I pay them far more than I could ever claim back, just in case I find myself back in that situation above one day. Sure, they’ll throw a few dollars back to you for therapies that they deem acceptable, but not for everything. At $100+ a session with absolutely no support from insurance or Medicare, Feldenkrais is not a treatment that is available to many.
It doesn’t stop once the medical bills are taken care of. Diet becomes expensive once your body starts reacting to low quality foods and a poor diet can exacerbate and increase the symptoms of many chronic pain conditions. It’s crazy, right? We live in a society in which affordable food for a person living solely on welfare and with chronic pain can actually make their condition worse. I might not believe this if I hadn’t experienced it, however cutting processed foods, grains and sugar from my diet made a huge a difference – to my health and my budget.
Heating and cooling costs also start to play a big part for people living with chronic pain. The weather interferes with how badly my symptoms are flared on any particular day. I am not alone in this, almost everybody living with chronic pain is affected by temperature and barometric fluctuations. When you’re on government benefits, there are concessions for heating in Winter… but that’s it.
Imagine being in pain and alone and cold and scared to turn the heater on because it’s November and too expensive.
This is a reality for some of the people that live in your society.
Unfortunately for me, the atmosphere that is least tolerable is heat and humidity. The only thing that helps with this is refrigerative air conditioning. Yep, the expensive kind. The kind that uses much more power than it’s evaporative cousin. Evaporative cooling doesn’t help me you see, it’s just adding more humidity. Refrigerative cooling, however, can be the difference between me being able to function around the home and being completely, flat-on-the-floor incapacitated.
Air-conditioning is not a thing that assistance is provided for at all. Not by anybody. You can either afford it or if you can’t and you’re like me, then you suffer. Once again, this is not something that I could afford without family assistance. It’s a good day to point out that if I didn’t have it, I wouldn’t be blogging right now because it has brought my pain down by a tonne since I woke this morning, burning in the humidity of Spring.
I have never had access to any sort of mobility assistance or carer assistance. My mobility aids – crutches, cane, wheelchair – have all been bought out of mine and my family’s pocket. There is no assistance for arranging travel to medical appointments, let alone if a person was still able to maintain employment but not afford a daily taxi. Many people living with chronic pain are unable to drive, ever, and are also too incapacitated or too flared by vibration/jolting/crowding to be able to use public transport.
People living with CRPS and other chronic pain conditions are not viewed as “permanently disabled”, even if they might be fully incapacitated for most of their time. If you can do things some times, then there’s no help for the times that you can’t. Times that can go on for months and years.
There have been many times when I am completely unable to get groceries, get to appointments or even feed myself without assistance from family and friends.
What happens to people who are like me but are struggling by without social support systems?
It’s amazing when people are able to remain in romantic relationships whilst dealing with chronic pain and illness. I am lucky enough to be one of them, but it was only earlier this year that my Prince and I decided to live together.
My income protection alone was under what the Australian Government deems “enough” and I have previously had access to healthcare concessions. Not anymore. Together, my payments and my partner’s income take us just over that cut off line. By just a smidgen.
Everything has gotten more expensive, even the PBS covered prescriptions. I am not able to afford to be an independent human being because I can barely cover the costs of food and utilities on top of my medical care. I have had to cancel treatment sessions that improve my health because I could not afford them that week. I haven’t been able to afford to pay my rent in months (luckily I know the landlords – my ever helpful parents). I’m still trying to learn how to manage this situation but I can tell you, it’s bloody tiresome to have to constantly ask loved ones for money.
I’m really not writing this because I want sympathy, this is just what life is like. Treating chronic pain is expensive.
What about the people with chronic pain, Australian Government?
What about the people that fall through the cracks of your overly fallible system?
Why would I be eligible for more help if I was in my exact same situation but aged 70?
Why would you be willing to pay me to have children but not to help me live as a productive member of society?
What about the people in pain who aren’t as lucky as me?
I’m not asking for handouts, I’m asking for improvement.
I’m asking that there be a system to assess the severity of an individual’s condition and provide caring and home help when it is needed.
I’m asking for some sort of concession status for people who fall between the poverty line and having enough to afford treatment for their health. Don’t pay me if you think my partner owns me now, but why does he have to pay more for the same services for me?
I’m asking to not be treated like a drug addict just because some of them abuse the medication that helps me.
I’m asking for recognition for treatments that help with pain management, I’m asking for these to be less rigid and open to individual assessment. Why should somebody with chronic pain who benefits from medication be more supported than somebody who benefits from Feldenkrais, Osteopathy, Chiropractic or Acupuncture?
Most of all…
I’m asking that people who are disabled by chronic pain have access to the same mobility/carer resources as people who are disabled by any other condition.
I am asking that a welfare/pension scheme be tailored for people with chronic pain, rather than frustratingly trying to match them up against non specific disability criteria and declaring them unworthy of help.
I’m an Australian and I want a fair go, just like most of us do. I wish that I knew how to make these changes happen, but I spend most of my time just figuring out how to make day to day life happen around my illness.
Maybe you know how to start change happening, that’s why I’m sharing this.
Please remember: I am lucky. I am very, very lucky. I’m reiterating this because if my situation sounds challenging to you, please realise that it’s a whole lot harder for people who are less lucky. I am able to write this blog and tell you about my problems, many of those in worse situations aren’t able to afford things like computers and the internet.
Just take a moment, right now, to think about them. Consider the people who can’t speak out for themselves and notice them. They are human and they exist. Change won’t happen until after recognition.
I’ll get off my soapbox now Audy, that’s more writing about money than I ever thought I’d do. I usually focus on why I am lucky and the things that I do have, but I’d be lying if I pretended finances don’t play a big part in coping with chronic pain, in terms of both treatment options and stress levels.
Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.
Love & Cents/Sense,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.