The Unspeakable Bits; From A Life With MS
When people in the general public read that multiple sclerosis is a “prime-of-life” disease, I really don’t think they understand the totality of what is being stated. It may even take those of us diagnosed a bit of time to realize, but when MS hits in the “prime of life,” it can also hit our prime earning years.
That’s just one of the ways that MS can hit us in the pocket.
Even if we are able to continue working, many of us have had to reduce workload, hours and stress, and excuse ourselves for medical appointments – all hindrances to those brass rings of promotion and pay increase. As a co-leader of my Men With MS self-help group puts it, “We go from ‘thrive’ to ‘survive’ mode.” These changes to our pay and potential pay can come back to haunt us a second, third and even fourth time when it comes to long-term disability payments, Social Security Disability and even reduced Social Security retirement checks when we reach retirement age.
Reducing the money that comes in isn’t the only way in which the disease tolls our life. Increased insurance premiums, larger and larger out-of-pocket medical expenses and unbridled rise in the price of MS meds can make us feel that MS has accessed our PIN and hacked into our bank accounts.
For those who do have to leave work and apply for various disability programs, the wait can be long and expensive. The current two-year waiting period for Medicare for those applying for Social Security Disability can drain a savings account tout de suite. The expense of a disability lawyer to help appeal rejections – while regulated, and often worth the cost – can add expense at the lowest point in our financial lives. Modifications to our homes and purchase of quality assistive devices are rarely covered to the extent many of us need.
One study published last year indicated that although the interferons are clearly beneficial, the benefits do not come cheaply either for insurers or for patients who have to pay their share in terms of co-payments or co-insurance. Another recent study has called into question the ability of the interferons to delay progression to disability, causing some to question their costs and benefits. (Editor’s note: Since other studies have contradicted these findings, additional research is needed to more effectively gauge the long-term impact of the interferon therapies, and to determine the most appropriate therapy for each individual.)
Then there are the costs that we might not think of. When gas prices go up, those of us forced to use larger and modified vehicles in order to accommodate scooters and power chairs are hit harder, for example. I’m sure that many of you could jump in (and I hope you will) to relate some of your surprises as to where MS hit your personal economy.
It is important to realize – hopefully before things reach their toughest – that help can be found in many forms. The National MS Society’s financial assistance program offers guidance, support and resources to help contain the financial impact of MS. To speak with an MS Navigator®, who can review available resources and provide an application, call 1-800-344-4867.
I would add money to the well-known list of polite unspeakables of politics and religion. Today, however, I’d like to open the conversation about the financial burden that MS can be to a person and family. We didn’t name this blog “The Unspeakable Bits” for nothing. Only by talking about it can issues be identified and addressed. And you can take that to the bank.
Wishing you and your family the best of health.