When I was a young woman, words like progressive, neurological, debilitating or illness were not in my vocabulary. Maybe I lived a charmed life, but those scary, serious words were foreign to me.
However, my Multiple Sclerosis diagnosis exactly eight days after I turned 23 forever changed all of that. I quickly became proficient using those words and got comfortable navigating the chronic illness landscape.
MS was my disease. My future. My reality.
And for as quickly as I accepted all of this, I also learned that having this disease was going to cost me. Looking back, I had no idea the price I would pay for having MS.
How much is MS costing me? Would you believe the cost of Multiple Sclerosis totals an average of $88,487 a year?
This is according to a new study commissioned by the National Multiple Sclerosis Society, which released the study’s finding on April 13.
The research article Economic Burden of Multiple Sclerosis in the United States: Estimate of Direct and Indirect Costs published in Neurology indicates that for the nearly 1 million Americans living with MS, “The estimated total economic burden was $85.4 billion, with a direct medical cost of $63.3 billion and indirect and non-medical costs of $22.1 billion.”
Ouch.
Sure, I have learned over all of these past 25 years living with MS that having this chronic illness is not cheap. Whether it is a loss in friendships, romantic relationships or job potential and employment, the disease can rob a person of so much.
That is why it is so frustrating and disheartening to read the report of the actual cost of living with Multiple Sclerosis. It’s worth repeating: MS has an annual average cost of nearly $90,000.
“Direct medical costs such as doctor’s appointment and medications are the biggest contributor to the high cost, with disease-modifying therapies (DMTs) being the biggest cost of living with the disease,” the NMSS reports.
And I’ve seen the costs of living with MS go far beyond finances. Along with the emotional devastation, the physical toll also is astronomical. Multiple Sclerosis has cost me my legs, my independence and – to some extent – my quality of life.
I never envisioned this life, but for me, Dan and those of us in the MS community, we somehow find the strength to carry on. We make the best of what we have because, well, that’s life. It is unfair and cruel at times.
Life also can be good, and I have to focus on that.
I have the power to use my words, voice, experiences and determination to change for the good where I can. Can I make it better for myself and others who are living with MS?
I’m willing to wager $88,487 a year that I will try.