What It Cost Me: The Facts
By Lauren Goodwin
This month, for Endometriosis Awareness Month, QENDO is shining a light on all the things endo has cost our community - both the tangible and intangible costs. Join us this month in asking: why, in 2021, does it cost so much to be diagnosed with, and manage, a disease that affects 1 in 10? Our What It Cost Me theme continues with physiotherapist Lauren Goodwin, who takes us through some of the facts and statistics surrounding the cost of endometriosis, interwoven with her own personal journey.
I sit staring at my computer screen, my right hand still on the mouse after clicking submit. Another assignment finished, another check box ticked. However, this wasn’t just any old assignment. I had just sent off a word document full of facts and figures to be graded, facts and figures highlighting the cost that endometriosis and related diseases has on the Australian Healthcare system. As I begin to close the 20 tabs I had open, a few facts from the Australian Institute of Health and Welfare (AIHW) jump out at me once again.
FACT: Endometriosis cost the Australian economy an estimated $7.4 billion in 2017-18.
FACT: In 2016-2017 there were 34,200 endometriosis-related hospitalisations.
FACT: 57% of endometriosis-related hospitalisations are partly or fully funded by private health insurance.
FACT: 1 in 13 visits are completed self-funded by the individual.
Now as someone with adenomyosis and suspected endometriosis, who is still awaiting her surgery following the COVID-19 related delays, I know that those facts and figures do not fully represent the real cost. Personally the financial cost includes a surgery that will leave me atleast $3,000 out of pocket. I am a part of the privileged few who can afford private health insurance which alleviates some of this cost. Now don’t forget to add in the cost to seeing your OB/GYN, and the deep internal ultrasound you need to get before you see them. That is at least another $500. Now don’t forget pain relief, medication, heat packs, TENS machines. They cost $$ too.
I could literally go on and on and on here. I lean back in my chair looking at the ceiling and reflect. The real price tag of being one of the lucky 10% of individuals who have the disease cannot be found amongst the literature in Google Scholar, nor only be exclusively defined as financial.
If my assignment word count would have been allowed, I would have added the following burden which is placed on this 10%. For me, it includes and will continue to include;
The sick leave spent every month when a flare up leaves me debilitated in bed.
The time spent stressed when sick leave has had to be taken for a flare up because I should be saving it for my surgery recovery.
The unpaid time spent recovering from surgery because I was simply unable to work during my flare ups.
The time spent looking at calendars, planning my life around when my flare up may happen and writing the days off.
The time that could have been spent being mindful and present during sex, spent instead of wondering whether this next orgasm would hurt as much as the last.
The time spent in doctors offices in the 8 years before my diagnosis being told that nothing was wrong with me.
The many tears spent thinking how badly I want children, that there is a possibility that my diagnosis could stop me from naturally conceiving. Knowing that my genetics put my future children at a high risk of having the same burden as I.
Time and money that could have been spent at work progressing my career, spending time with loved ones, going on holidays. I remember that at least I have had that time and money to use. This burden is bigger than numbers and the cost is often too big to bear. Individuals often go without help because they simply cannot afford it. Suffering away from pain and other symptoms, simply because they either don’t have the money, or the time or even the information needed.
I finally close my laptop and stand up away from my desk, simply shaking my head at the fact I didn’t include this in my assignment.
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