"Out of Pocket, But Not Out of Mind": What It Cost Me
By a member of our community
Having a chronic condition is expensive and we didn’t ask to have one, or two or more of them bestowed upon us. This isn’t anything new to the chronic illness community, we get it, we understand it, we live it. However for those not acquainted, it costs a lot.
I remember going to see my first specialist in 2014. $200 for a 15 minute appointment with someone who told me they don’t operate, and that I would need to go and see someone else. This was my first cost associated with my adenomyosis and endometriosis. From there it’s been a huge juggling act of financial, emotional, physical and mental costs.
Let me start by saying I do have private health, and for this I am so grateful, because I know not everyone is in the position to even afford it, meaning you are completely out of pocket for any private surgeries or allied health appointments. However the gap for these things is still quite large. For example, my most recent surgery, I had a $500 excess to go to the hospital for my surgery, and then received just over $120 back from my laparoscopy, meaning the out of pocket costs for this one procedure equate to roughly $4,500.
Isabella before paying $300 out of pocket for a pelvic MRI
When friends are talking about saving for holidays or houses or cars, I’m happy for them, of course. However, I also start to reflect internally and think of the money that has been spent on my adeno and endo; surgery, scans, blood tests, daily medications, devices for pain management, follow up appointments, physiotherapy, osteopathy, acupuncture and nutritionists since my diagnosis six years ago. There’s a feeling in the pit of my stomach and I feel uneasy. Is it a flare up? No, not this time. It’s a feeling of loss and at times anger, for what these diseases have cost me.
Now I know that comparison is the thief of joy, and the grass is always greener, however at times it is incredibly difficult to cope with others reaching new life stages, while I’m spending all my money on my endometriosis and adenomyosis, and these are valid feelings. It’s costs you don’t even normally think of. It’s the time off work and loss of income. It’s the time away from uni. It’s missing out on social events because you’re just simply not well enough to go, or going and not enjoying yourself because you are mid flare up. It’s worrying about your fertility and if you’re going to have to freeze your eggs or need fertility treatments to have a baby. It’s having to rely on your parents to assist you financially because at times all the costs are just too much.
I value my health, and so these financial costs are worth it at the end of the day. I spend money on surgery, appointments, medications and therapies etc. so I can have quality of life and manage my conditions effectively. Over the years my adeno and endo have taken so much and I am determined to not let them win.
However, I shouldn’t have to be so out of pocket when it comes to managing these conditions, and toss up quality of life vs. ever owning a home. More needs to be done around subsidising the costs associated with chronic conditions, especially when it is well known that a multidisciplinary approach is the best standard in managing both adeno and endo. The rebate I received from my last surgery was minimal, and I was left over $260 out of pocket for my last pelvic ultrasound. The fact that 1 in 10 people assigned female at birth are living with these conditions, yet have to pay so many out of pocket costs, is not fair. We are so lucky in Australia to have Medicare, however the item numbers do not offer nearly enough rebate and still leave so many of us with much to be desired when it comes to the claim refund the following day.
So I challenge you to share what adenomyosis has cost you. It doesn’t have to be financial, but the other costs such as family, friends, employment, experiences or education for example. Speak up, start the conversation and let’s make a change that those with chronic illness are crying out for.
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