MS and Your Finances

I’m switching gears today to discuss a topic that concerns me greatly: MS and your finances.

I was online recently, reading two message boards that I sometimes visit: one about personal finance and the other an MS forum. I decided to give the Employment section a read on the MS forum and it really opened my eyes.

Not only are so many people struggling to maintain their jobs while their health is declining, but others were past the point of staying in the workforce, denied disability and are struggling to make ends meet while they appeal the initial denial. They burned through their savings paying medical bills, lost their jobs, and are generally in a scary place.

This does not just happen with MS.

When reading such difficult stories, how does one respond?? I often wish I had a magic wand to fix such problems, but that is not the world we live in. 

Sometimes I get so angry. I want to raise my fists and scream to the sky at the unfairness of it all. Not only are you fighting a daily battle and are reminded of what you lose physically, emotionally, and cognitively, but then there’s the added financial strain. Not only is being chronically ill expensive (my medication + infusion cost $5,000+ per month) but there’s the added worry of remaining healthy enough to stay in the workforce.

Let’s also not forget the added stress of learning to adapt and accept your limitations without using them as a crutch, AND the added burden of navigating an incredibly complicated, unfriendly healthcare system to get the care you need while paying through the nose for it.

It is a difficult emotional process and complicated line to walk. One in which your illness forces you to reevaluate your life.

But back to the stress of employment. It’s amazing, the many personal questions that come to mind.

Do you disclose? Not disclose? What do you say when you have a flare and need to be out for weeks at a time? How do you not feel guilty, upset, and worried? How do you try to plan for retirement when everything is so uncertain?

I truly believe that the greatest financial expense of chronic illness is the loss of income over time.  

And so I scour financial forums for advice or even camaraderie, but find little regarding how to plan your finances when chronically ill. It’s all about saving and planning while healthy so you have enough saved for when you BECOME ill.

It’s frustrating to visit these message boards and not find much guidance. Lately — with lots of research, time, and thought — I put my own pieces together.

In summary, DH and I aggressively paid off all consumer debt (credit cards) and then paid off our car loan. In addition, we took extra money that we had been saving and funneled it toward paying off our student loans with the goal of paying them off as soon as possible. 

Our student loans were by far the largest of our debt. At one point, we had over 40,000 in student loans between the two of us. By scrimping and saving, being frugal, and increasing our earnings, we were able to pay off our student loans. We were fortunate. My health remained stable. Now our last major expense is our mortgage…

I highly recommend speaking with a financial advisor who understands MS who can offer additional suggestions about life insurance, disability insurance, and long-term care insurance.

Right now we are fortunate, but I worry all the time about finances. Tysabri is currently working and keeping my MS in check. I still have symptoms from previous relapses, some of which are incredibly annoying (blurred vision in my right eye, being one of them)  with the understanding that there needs to be a balance.

I will not spend my healthy years scrimping and saving every penny and depriving myself of travel, giving, and purchasing items that I find meaningful (art, art classes, etc…). Life needs to be lived and enjoyed. My difficulties lie in finding a balance and accepting difficult circumstances when MS rears its ugly head.

Please note: The ideas expressed here are for informational purposes only. Please discuss any financial concerns with a licensed professional. 

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