I am in my early 20s and have a chronic, degenerative medical condition that will get worse as I age. It’s not super serious, but it is painful. My life expectancy is average. Because of this, I’m not really sure how to handle money. I currently get my full paycheck and don’t contribute to my 401(k). I use all of my money (after bills) to travel, see bands I love, go to new restaurants, and just generally enjoy life. People (mainly my parents) have been urging me to start saving, and contribute to my 401(k) or open an IRA or something for my future. But I don’t want to.
Most people save for a comfortable retirement, full of travel and relaxing on the beach, but I won’t have that. My condition will progress to the point where I won’t be able to do the things I love, so it seems pointless to save for a happy retirement when I know I’ll be miserable and disabled. I may get to a point where I decide to end my life (way into the future, not anytime soon) if the pain gets too bad (sorry this is super morbid!).
I’m in therapy and I talk about this a lot, but my therapist is more of a listener rather than an advice-giver, so I’m turning to an advice column! Should I start saving for retirement, or just enjoy my life while I can?
These are tough questions. I’m impressed that you’re looking so squarely at your future, given how painful it sounds. A lot of people in your shoes (and in general) might not be so frank and forward-thinking.
But I also think that not saving for your future is a type of avoidance — a denial that it’ll ever exist. You should prepare to want more. I’m not saying that to minimize the physical pain you’re anticipating, which must be terrifying. What I’m saying is that preparedness is the best antidote to fear and uncertainty, and saving money is a pretty good way to prepare for anything. Money gives you more and better options, period. Nobody ever knows the future, but it’s pretty universal that saving money now gives you more flexibility later, and by not saving money, you will permanently hobble yourself.
Another thing: You don’t actually know how you’re going to feel in 10, 20, 30, or 60 years. Off the top of my head, I can think of a dozen scenarios that might make you wish you’d saved for retirement — you fall in love with a person you want to share it with, advances in pain medicine make it more comfortable, you realize that life is still worth living even if it hurts, and so on. The possibilities are broad, and you’ll want to be able to afford them.
To address your situation more specifically, I called personal finance expert Tanja Hester, co-host of the podcast The Fairer Cents and author of Work Optional. She has Ehlers-Danlos syndrome, a genetic disorder that causes joint pain and mobility issues to worsen progressively as she gets older. I’m not sure how similar it is to your condition, but like yours, it won’t shorten her lifespan. Her dad also had it, so she grew up knowing what her future could look like. For that reason, she wound up taking the opposite route from you — in her early 30s, she decided to save like crazy so that she could retire early, at 38. Now, she and her husband spend their time skiing, traveling, and doing whatever they feel like. They’re about to fly to Mexico City for a few days, just to see a concert.
Don’t worry — neither Hester nor I will suggest that you try to replicate her aggressive saving strategy, which isn’t realistic for most people. But you should save something. “I completely understand when you say, ‘My life in the future is going to be so bad that I’d rather spend my resources on enjoying it now,’” Hester says. “But it’s not all or nothing with your money. You can allocate some of your money to the things you love to do right now, and some to saving, and I think you’ll be very glad you did.”
When Hester was growing up, her dad’s condition got so bad that they had to live off his disability insurance, which gave her a clear picture of what a big difference money can make. “I knew that I didn’t ever want to be at the mercy of the disability system, because it treated my dad so terribly,” she says. “That changed my approach to saving. Which isn’t to say I was always financially responsible, but I was careful. And I definitely didn’t have a ‘my future sucks, so let’s be nihilists now’ mentality, because I knew that money would give me more power.”
On that note, Hester strongly recommends buying disability insurance, especially if you have a job that offers a plan through your company. If your employer doesn’t offer a policy, consider buying one on your own. Disability plans vary state by state, but depending on your condition and how many years you’re able to work, the extra income stream could be a game-changer — they were for Hester and her dad. “Even though things were difficult for us, we were still middle class,” she says.
Money doesn’t just help you navigate systems — it also buys things that make life more comfortable when you aren’t. “You’ll want to be able to afford help when you need it, whether it’s with traveling or just having someone to come clean your house,” says Hester.
As for how to actually go about saving: Take it step by step. Start by contributing to your employer’s 401(k) plan, especially if there’s a match (free money!). You should be able to set this up automatically, so that you won’t have to make any decisions or fret about what you’d rather be spending your paycheck on. At first, siphon off a percentage of each paycheck that you probably won’t notice is missing (say, 5 percent), and then try bumping it up every couple of months until it’s closer to 10 percent.
Sarah Asebedo, a licensed family therapist and professor of personal financial planning at Texas Tech University, also suggests making a plan for your savings if you don’t wind up using it yourself — ideally one that involves a person or cause that will keep you motivated. “Let’s say there’s a scenario where you don’t need to use the money you’ve saved,” she says. “Then, there’s an opportunity to leave a financial legacy to a charity or family member in your memory. Perhaps there is an organization that supports future research in the area of your condition that you could leave money to. These things may not be important to you now, but they might be important to you later.”
Overall, your goal is just like everyone else’s: to find a balance between squeezing every last drop out of today, while also stockpiling resources for your future. But what a lot of people don’t realize is that these things go hand in hand — today is more enjoyable when you’re also prepared for what’s ahead. I’m willing to bet that you start feeling more optimistic about your future — or at least more in control of it — once you start saving for it. You might as well see for yourself.