Insurance helps if you have it. But there are still copays and deductibles to be met, along with lifestyle changes that can wreak havoc on your wallet. Samantha Payne Smith, 42, and Sheena Williamson, 44, who met at church, discuss this and other financial aspects of living with relapsing-remitting multiple sclerosis (MS).
Sheena Williamson: Treatment itself hasn’t been a big financial burden. I haven’t been on medication since 2016, so paying for that hasn’t been an issue. While I see my doctor regularly and I’m going to restart drug treatment soon, I have health insurance through my employer that helps cover my medical costs.
However, healthy lifestyle changes are a part of my treatment plan. And when it comes down to eating a balanced diet and working out, those things all cost money.
I want to stay fit and agile, and not just because I have MS. I’m 44 and only getting older. But it can be hard to exercise consistently. That’s partly because there’s a financial burden that comes with a monthly gym membership.
But I’ve found a workaround: I go outside and walk, or I use the treadmill I have in my house.
Fruits, Veggies, and Finances
There’s also a monetary piece to buying the right foods. One doctor told me that I probably need to be on more of a plant-based diet, and I need to eat more fruits and vegetables. But eating clean and healthy is more expensive than grabbing something easy like fast food.
That’s not to say I don’t try to follow my doctor’s advice. I eat healthy when I can, and I can usually do it for a little while. But eventually it starts to burn a hole in my pocket. That’s when I go back to eating chicken or pork or cheaper processed foods.
Time off from my job also takes a financial toll. My check comes up short when I can’t go to the office because of my MS symptoms. Sometimes I can’t go to work because I’m so tired. I had to take off work for 3 months once.
I have job protection under FMLA, or the Family and Medical Leave Act. But there’s a big financial impact when you can’t participate in the workforce because you're trying to get yourself back to a healthy baseline just to function normally.
I also broke my ankle once and had to take off for a couple of months. You might not think about something like that being related to MS, and my doctor didn’t blame the accident directly on my disease, but my balance is off because of my illness.
Samantha Payne Smith: I would agree with all of that. I’m 42, and when I first got diagnosed a couple of years ago, I went on a strict diet that was really expensive. I didn’t eat anything white. No cheese. No dairy. No gluten. No sugar. And I didn’t eat any meat, only seafood.
And when it comes to exercise, I bought a Peloton. The equipment itself wasn’t cheap, but I also pay for a subscription service. Because the exercise bike doesn’t do what it's supposed to do if you don't have the membership, right?
And when it comes to work, MS limits my ability to take chances that might boost my earning power. For example, I have a full-time job as a school nutrition counselor. But I opened a hair salon on the side a year ago. It’s doing amazing, much better than I ever could’ve imagined.
Sheena Williamson: Yay! Congratulations! That’s awesome.
Samantha Payne Smith: Thank you! It was the scariest thing I’ve ever done.
I think I could out-earn my current income quickly if I devoted more time to my own business. But I can’t leave the security that comes with my full-time job because it gives me a steady paycheck and covers my medical bills.
And my MS medication is expensive. I know it costs about $9,000 a month. Luckily, I haven’t had to pay any of that because my employer and health insurer pick up the tab. And it feels too risky to leave my job to fully pursue my dream right now.
I’m sure any entrepreneur has big fears about going out on their own. But those worries loom larger when you have a big glaring thing like MS to think about. I know it’s there even when I don’t look or feel sick.
So, even though staying in my job may mean I make less money in the long run, it’s super scary to think about how I’d pay for my treatment if I left.
Even with insurance, I have to cover copays and deductibles for things like MRIs. I had to pay $500 just the other day. And I have to think about things like life insurance. In 20 years, will my plan cost more because of my medical condition? And would being self-employed affect my premium?
I’m also figuring out what kinds of investments or retirement accounts will cover longer-term care if I need it. I don’t want to be a burden on my kids.
You know, I hadn’t really thought about all these financial aspects until now. And while, thankfully, I’m not someone who has trouble paying for my medication, I do have to think a lot more about what goes into managing the costs of my long-term health than before I was diagnosed.
Multiple Sclerosis: Thinking Long Term
Sheena Williamson: Exactly. I only have one child, but I don’t want her to bear the responsibility of trying to provide for me financially or taking care of me physically. So, I’m trying to put a plan in place to prepare for if I ever need that kind of long-term care.
And MS not only costs money now, but it keeps you from financial freedom in some ways. And like you, I can’t just walk away from my job. What would I do for health insurance? If I get sick or fall down, who will pay for my recovery?
Samantha Payne Smith: Yeah, and I don't even know what it looks like to get private insurance when you have a pre-existing condition like MS.
Sheena Williamson: Under the Affordable Care Act, health insurance companies have to insure you no matter what kind of health condition you already have. That’s one of the best things they could have ever done, because imagine working somewhere and having to stay there and not being able to go for another job because you can’t get coverage for your MS.
But honestly, I’m not sure how that works when you’re self-employed and buy private insurance. They probably have to cover you, but it might be really expensive. And when it comes to life insurance, I’m not sure how MS will affect premiums down the road, but that’s something to think about.
Because of my experience, I talk more about things like life insurance or long-term health plans. And I always encourage people to get a job with benefits, even if they’re young, because you never know what’s going to happen with your health.
They look at me like I’m crazy, but I was unexpectedly diagnosed with MS in my mid-30s. And luckily, I was working when it happened and had really good insurance. And like you, most of my medical costs were taken care of through my employer.
I think we need to talk more about things like this in the MS community and beyond. Maybe your health is good today, but are you prepared financially for what might happen tomorrow?
Show Sources
Photo Credits:
RichLegg / Getty Images
Mondays Are Beautiful
SOURCES:
Sheena Williamson, 43, social worker, Westchester, Ill.
Samantha Payne Smith, 41, MS advocate and owner of Samantha CurlHaus, Chicago.
