The Hidden Costs of Multiple Sclerosis

MS is sneaky. It is expert at evading detection and diagnosis, and often brings a host of invisible symptoms that may come and go at random. MS also brings invisible costs — expenses beyond the obvious medications, supplements, assistive devices, and healthcare.

I am not talking about externalities, such as costs to my employer, co-workers and clients when I take sick days. Or the emotional costs to my family and friends when I cancel plans. Or the cost to society when someone drops out of college, quits a job, or gets divorced because of MS. It’s true that MS takes things away from our society, community, and family when it takes abilities away from us. But those aren’t the costs I’m talking about this time. These invisible costs are actual dollars out of my bank account.

Two of my MS symptoms are the main culprits behind this frequent pillaging — fatigue and cognitive fog. Like Bonnie and Clyde, they often work together. Perhaps they are more Robin Hood-ish as they redistribute my wealth? (Although, they are usually giving it to corporations or government entities, rather than the poor.)

Hidden costs of my MS fatigue

• Delivery fees when I’m too tired to cook, grocery shop, or drive to a restaurant.
• Hiring someone to help with housework when cleaning the tub may as well be climbing Mt. Everest.
• Paying for the most expensive parking garage, because it is closest.
• Paying more for __________(fill in the blank). Airline tickets, hotels, shoes, cars, etc. Fatigue does not make room for comparison shopping and bargain hunting.
• Hotel rooms because I cannot drive the four hours one way, and another four hours back in one day. I cannot drive from the city after 11 p.m., or drive far after a busy day either.
• Extra charges that I am too tired to call and contest. Yes, sometimes I just pay for things I shouldn’t because I don’t have the energy to make a phone call.
• Slippery slope of deferred maintenance – a windshield ding that turns into a big crack, or the plumbing leak that causes a flood.
• All the good ideas – tickets bought, an online course paid for – that I end up too tired to do.

Hidden costs of cognitive fog

• Misplaced bills and late fees.
• Accounting errors resulting in overdraft fees, etc.
• Fines (I haven’t managed to file taxes or an extension yet … wonder what that will cost?)
• Purchasing stuff I do not need because I am too tired to say no, or walk away from an overly effective salesperson.
• The extra gas my car uses every time I get lost.
• Replacing items that I lose, even though I probably will find them as soon as the replacement is here.
• Charges for missed appointments. The counseling session that would have been a $10 co-pay is $100 out of my pocket when I forget about it, or put it on the wrong day in my calendar.

One recent example, in the form of a little yellow envelope, is sitting next to me. Three months ago I received a notice that my car tags would expire in a month. I thought I put the notice with my bills, but found it a few weeks later, safely tucked into an Environmental Science magazine where I must have put it during a foggy moment.

My tags were due to expire that week, so I planned to take care of it on a lunch break. Each morning I reminded myself, and each afternoon I forgot. That Saturday I went online and purchased my tags. I selected the option to mail to my house (delivery options are great when you have MS). A message popped up, “ARE YOU SURE YOU WANT TO HAVE THESE MAILED TO YOU? Your tabs are about to expire, and you must allow 5-7 business days to receive them by mail.” Ack! Doubt crept into my mind. I switched it to “Pick up at Licensing Agency” I would just swing by on my lunch break Monday to get them. (Yes, I know …)

Two weeks later I came out of a doctor’s appointment to find a ticket on my windshield: $86 for expired tags.  I had 15 days to mail in the document, and request a hearing to explain why I “did not commit the infraction.” I drove straight to the licensing office to pick up the already-paid-for tags, and made a note in my calendar to send in the hearing request on Saturday.

When the weekend arrived, I could not find the ticket. My car, house, and office are very, very cluttered these past few months as I’ve battled increasing fatigue and fog. The plethora of paperwork made it impossible to find the ticket. I’d lost it. That Tuesday, at 11:32 p.m., I went online hoping to search for my citation number by license plate. No luck. The city was not going to make this easy. For the next three days I made a note in my calendar to “call the city about ticket.” My work days got away from me, the call was forgotten, and next thing you know I was leaving town for two weeks.

A few days ago I found the ticket. Just sitting on the floor in the backseat of my car, hanging out, bright yellow, mocking me. It’s about three months old now, and I will pay $120 because I did not respond in time — $120 plus a couple of delivery charges are the price of fatigue and cog fog this week.

I don’t have a list of suggestions or strategies for managing fatigue or cog fog. But if you are like me and this duo is wreaking havoc on your finances, you may want to consider seeking help through the National MS Society, your healthcare provider, a social worker, or just a thorough internet search for tips.

I will continue to try new ways to decrease the invisible costs of my illness, and I’d love to hear your ideas.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.