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The lupus horizon: how to plan like a sickie

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I recently spoke with a twenty-something woman who was diagnosed with an illness that ends in disability and death. To protect her identity, I won’t share further details of her situation, but I will share my responses to some of her concerns.

Many people have advised her with the cliched, but solid advice to make the most of her able-bodied years: travel, spend time with loved ones, do what you truly enjoy, etc. These are nice ideas, romantic and mostly floating in the ether.

As you might have surmised, my brain doesn’t think like a Hallmark card. Instead I think about harder history and the nuts-and-bolts of how to avoid the rougher aspects of disease – especially if you have decent advanced warning of what awaits you.

I directed her to consider her financial health as much as her physical health. Below is the gist of the exchange:

On earning, saving money, working now, etc.: illness caused my time on welfare and also forced me to apply for SSD (Social Security Disability). I am blessed to have recurring bouts of good health and sustainable work/income; however, I learned through those experiences that when the worst of disease hits, there better be money readily available to you to support you through that time period until welfare and/or SSD kicks in, especially SSD, since you may be rejected the first time around and have to re-apply.

If you can work out a financial plan for yourself that specifically addresses period(s) of disability and the resulting budget you’ll need at those times, you’ll be working from a position of strength instead of scrambling. It may be easy and romantic to think in terms of adventures now, and I say, hell yes, do them. Of course you should.

But do so knowing you’re being a good mama bear to your future sickie self, assuming that sickie self actually happens – we don’t know yet what technologies will be available. If, in 1990, someone told me there would be a wonder drug named Arava that would so change my joints, I would have scoffed. Then I benefitted from Arava when it came out in ’98 or thereabouts; I started on the drug in ’99 IIRC. Interestingly, there are enough rheumatologists who never prescribe it and enough patients who never heard of it, but it was a life-changer. This is why I tell people to be in the loop for new drugs, upcoming studies, new procedures, etc.

With your financial planning, it could be helpful to consult a pro who realizes the impact of illness around the corner. Just recently I made an appointment with someone at my bank to talk about IRAs, until we realized that I would likely never live long enough to benefit from one – so much for that plan! Instead we took a different route. I *may* live to redeem an IRA, and I may win the lottery, but I prefer a plan that can take the hit of a non-fairytale ending and still keep me going.

Often the non-profits associated with certain health conditions can be your starting point for this kind of planning. They also usually have newsletters that give a rundown on new drugs, studies upcoming or in progress, etc.

There is math, and then there is sickie math when it comes to the economics of illness and financial planning guided by a diagnosis. This is a point that I discussed in my article in Philadelphia Weekly.


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