It’s not polite to talk about the financial cost of chronic illness, but we must. We need to create awareness of the deep hardships created simply by being sick. Without speaking out, there will be no change. Two years ago, I decided to share something very private in the hope that it would shine a light on another aspect of living with chronic illness.The cost of chronic illness – the money

Sometimes, there’s nothing for it. Sometimes, you try and try and try and then you try some more, but you can’t get past where you are. Sometimes, the struggle takes on a life of its own, colouring everything else around you, making it impossible to have a moment that is pure and free of worry. Sometimes, it turns you into a modern-day Sisyphus, pushing the rock up the hill over and over, only to have it roll down again. Sometimes, you get so lost in the fight that you lose perspective, instead blindly moving through a morass of futility.

Sometimes, you have to surrender to reality.

Six months ago, I was one of the spokespeople for The Health Council of Canada’s report about people who live with chronic illness and their challenges within the healthcare system. My story focused on the cost of chronic illness – the money. Because having a chronic illness is expensive. Add a disability on top of that and it becomes major money.

We don’t talk about the money. It’s not polite to talk about money and it’s certainly not polite to talk about having money trouble. And I struggled a fair bit before I decided to be more open about it. On both the internet and television, no less! As part of the spokesperson experience, I was interviewed by Global News and at the end of that interview when the reporter asked me how I managed, I made a smartass comment about being very grateful to Visa for all their help.

The problem with Visa is that they want their money back. The problem with having a chronic illness and a disability is that the expenses are never-ending and substantial. In the past nine years, I have spent somewhere in the neighbourhood of $65,000 on the medications and equipment (wheelchair, automatic door opener, etc) that I need to live. Even with having a part-time job for the past four years, that’s a lot more money going out than coming in.

Three years ago, I looked into declaring bankruptcy. Ultimately, I decided against it because I couldn’t afford to not have my credit cards. Credit was the only reason I could afford my meds, random wheelchair repairs and the like. I took a look at my debt and I took a look at the fact that I had a job and was convinced I could deal with it, sure I could get ahead somehow.

I was completely deluded. I couldn’t deal with it, I couldn’t get ahead of it. As the medication costs continued, as my grocery bill grew because my body became less cooperative in terms of what food it would tolerate, and as my wheelchair continued to be a lemon that needs a ridiculous amount of repairs, the costs kept rising and so did my debt load.

For a long time now, I have become nauseated every time I pay my bills. For a — long time, I have managed to only pay the minimum payment on my debt every month, essentially just the interest. And for a long time, I have run out of money around the 18th of every month and needed to use credit to buy groceries.

This is not a recipe for paying off your debt. All this does is increase it, gradually, inexorably, nauseatingly.

There is a saying attributed to a variety of people (including Freud and Einstein) that the definition of insanity is doing the same thing over and over again and expecting a different result. Recently, I took a long, hard look at my life and realized I needed to face facts: to continue on this road came awfully close to meeting that definition.

And then I wrestled with the shame. Because you’re supposed to honour your debt. It’s how I’ve been raised and it’s a deeply held value not only within myself, but in our society. How do you get to the point where you can admit to yourself — and others — that you need help?

A couple of years ago when I first looked into bankruptcy, I talked to a wonderful bankruptcy trustee who did much to take away the feelings of shame. I also have a good friend or two who’s going through it and seeing them get back on top of their financial situation, meet their obligations and thrive, made it easier to see the purpose of it. But still, it took months to get there. Intellectually, I could see the necessity, but emotionally, I still had trouble.

I tried talking to my creditors about lowering the interest rate so I’d be able to pay off some of the principal every month, instead of just the interest, but they came back with a half of a percentage point. Which would do nothing. And then I finally talked to a trustee and discovered there were options. I could declare bankruptcy or I could do a consumer proposal. In the latter, you set out a budget and based on the numbers, propose to pay off a certain amount of your debt over five years. So I took a realistic look at my budget, crossed my fingers that I would have a job for that time and sent it in.

On Friday, I got the news that my proposal has been accepted.

For the next five years, I will give a certain amount of money to my trustee every month.  And I will be able to afford my groceries not just in the first week of the month, but the last one, too.

And it turns out that there is no shame in it at all. There is only relief and the knowledge that this is the beginning of getting back in control. The start of freedom.

Postscript: two years later, I’m in a completely different financial situation. After rent, groceries, medications and wheelchair repairs, there’s enough money left over to start saving up a nest egg. I’ve even started investing a bit of it every month! This was indeed the best thing I’ve ever done.

Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain