The Financial Impact of Endometriosis

Last year, the SBS programme Insight did a segment on endometriosis, estimating that it costs Australia at least $7.7 billion per year.  Our problem uteruses (uteri?) are bad for the economy.

The impact at an individual level, though, is arguably far more devastating.  Not in dollar amounts, perhaps – the idea that I would ever lose out on $7.7 billion dollars is estimating just a smidge high – but in terms of what it costs us as a percentage of our expenses.  Now, as another financial year winds to a close, seems a perfect time to discuss that.

(I want to apologise if I’m slightly incoherent.  I have another cold and I’m muddle-headed, dizzy, nauseated and slightly rambly, and my hands keeps trembling so I’m making some exciting typos.)

I don’t have super statistics about what endometriosis costs each sufferer.  I can only really talk about how it effects me, and the anecdotes I hear from others in the community who mention missing work, having to quit jobs, etc.

For me, missing work is by far the biggest impact.  I burn through any paid sick leave I have extremely quickly.  If it isn’t endo pain, it’s an infection or illness because my overburdened immune system can’t stand up to even the most pathetic germs.    That means that on days I don’t work, I don’t get paid.  Currently, my Prostap injection has failed me, and I’m home sick yet again because I can barely stand up and I’m so swollen that clothes actually hurt.  Also, the abovementioned cold.  I’ve made it to work one day this week.  That means I’m looking at another pay cycle at effectively half pay.

Of course, for sufferers who can’t work or can only work part-time or in casual roles, the financial impact is even worse.  I’m very lucky to have a good job with a good wage.  Many people can’t say the same.  Some have the fight of their lives to try and get the Disability Support Pension, which is not much, and have to live off Newstart in the meantime, which I understand is considerably less and puts you below the poverty line.

Regardless of whether I get paid or not, the cost of my Prostap is $358 every six weeks.  I’m fortunate enough to have private health insurance, so I get $100 back.  (It’s worth noting that Prostap is on the PBS if you have prostate cancer, so it will only cost $48 then.  If you have endo, no PBS benefits for you).  Add to that the cost of the hormone replacement therapy, which is $50-$100 monthly depending on the pharmacy.  I have actually stopped taking it because I didn’t find it that helpful, but it was an additional cost for several months.

Then, of course, there is the cost of surgery.  If you pay privately, you are looking at thousands.  If you go on the public waiting list, you could be waiting over a year depending where in Australia you are – more time with more pain and therefore more lost income and more money spent on pain management.

In between surgeries, there are multiple appointments with doctors and specialists.  Bulk billing doctors are a treasure, but if you can’t get those and don’t have a healthcare card, it’s usually at least $40-$50 per visit after the Medicare rebate.  If you need to keep going to the doctor to get medical certificates, new prescriptions or things like injections (such as Prostap or Zoladex) that adds up very quickly.  I’ve put off doctor’s visits and even buying medications before because of the cost.

Tax time is generally the only time you get a break.  My absences usually result in me being overtaxed and getting a bit back at tax time, but that’s one lump sum a year.  If I get anything back this year, it will be going straight to paying off some debt, and anything left over I will spend on wild items like moisturiser, because I’m currently scraping dregs out of jars rather than spending out on something like that that I view as a luxury, even though my face might crack and fall off without it.

I do want to finish on a slightly more positive note, though.  These are some methods I have used to try and minimise the impact on my savings.  They won’t work for everyone – you have to a) have savings, and b) have enough to put into them – and I’m by no means a financial planner, so please don’t take them as gospel.  I acknowledge my privilege here in that I am relatively well-off, and I beg you not to try and do things you can’t afford because of the idea that if you aren’t saving you’re a terrible adult.  If you can’t afford it, you can’t afford it.

1)  I budget by percentages and priorities, not dollar amounts

I carefully budget what my pay will go towards.  However, because I can’t guarantee I’ll be getting the same amount each week, I allocate percentages rather than figures.  If I say I have to put $500 towards savings a week (a pipe dream even at full pay) then I’m going to be struggling when I need to pay for petrol and groceries but only got paid $600.

My biggest percentage goes towards the mortgage, with smaller percentages for my savings account (to be touched only as a last resort), my emergency account (to be drained before I touch my savings but only if I have nothing left in my spending account), and charity (I can’t engage in much else in the way of service or activism, and giving to charity is a vital part of helping me feel like I’m making a difference despite that, so it’s non-negotiable).  I budget a particular percentage for paying off debt, but since it is to my parents and they are Very Nice People they are happy for me to not repay them if something else comes up like a vet bill (thanks Max) or unexpected medication or a small pay, so I have a little leeway that fortnight.

2) I quarantine my savings

As described above, I have two savings accounts – one for actual savings, which gives me a higher interest rate as long as I make regular deposits and don’t remove money from it, and one for emergencies, which has lower interest but allows me to remove money as needed.  I top both up at each pay with the same amount, but will always take from my emergency account first.  If I don’t have to take from it, great, I’ll earn more interest than I would with the money in my spending account, but if I do, it’s there and not being spent on other stuff.

I have absolutely got to the point before where I’ve blasted through my spending account and my emergency account (usually when big bills coincide with big medical issues) and touched my savings before, but this helps minimise the chances of that happening.

Of course, if you don’t have the income to split like this, this may be a terrible idea.  If I get paid a really small amount, I will skip putting stuff in the emergency account and put it in savings instead.  If I get paid even less than that, neither account gets a dollar.  You’ve got to be flexible with any system and put the money where it needs to go.

3)  I pay attention to my super

I was lucky enough to attend a financial planning seminar for women in law last year, and one thing that was emphasised is that women, particularly young women, don’t pay enough attention to their super.  One the poorest demographics in Australia currently are old women, who often have very little or no super and who have not taken an interest (or not been allowed to take an interest) in their own financial matters.  You should always be in involved in your own finances.

In terms of super, the advice given was this – if you are with a solid super fund, which most industry funds tend to be, and you are many years away from retirement age, don’t be afraid to put some of your money (not all!) in the higher risk option for your super fund.  The risk is relatively low, because it isn’t all your money and you are many years away from needing it, and the payoff can be high.  As you get older, move it all into lower risk options.  This will hopefully maximise the amount you get at retirement in a way that doesn’t expose you to unnecessary risk.

I stress that this was advice given to me by financial planners, not something I’m just saying.  It is entirely at your own risk if you do this and I’m not personally advising it (or advising against it).  It is something I do, however, because I want a good retirement to make up for the difficulties I’m having now.  That’s when I imagine I’ll actually have the health to do fun stuff, and I’d like to have the wealth to back it up.  Don’t sue me if doing this fails for you.

4)  I do my best not to feel guilty when I can’t meet my financial goals

So, this one is no use as a savings tip, but it is super important.  Financial pressures are real and they suck.  Often we have to give up on things we want and abandon or delay savings goals in order to pay the bills or buy food.  I avoid articles about “how I paid off all my student debt and owned seventeen houses by the time I was 25!” because they are usually a) written by someone with no idea how privileged they are and b) make me feel bad, not motivated.  You really can only do your best.

 

How has endo affected your finances?  How do you do your best to combat it?  Let me know in the comments!