How a Graduate Student With a Chronic Illness Does Money

Photo by Bence ▲ Boros on Unsplash.

Chloe (not her real name) is a 29-year-old graduate student pursuing a writing MFA. This interview has been lightly edited for clarity.

So, Chloe, how much money do you earn?

Right now, $0. I’m in a full-time graduate program for a writing MFA. Tuition is $15,000 a year, but I got it cut in half by a merit scholarship last year. This year I got an outside scholarship that will cover it completely, but I haven’t received the money yet.

Last year I earned about $6,000 in various freelance editing jobs, but I ended up not taking on any more this year because I didn’t have the energy between school and ongoing health problems. So instead I’ve been going through my savings. Right now I have about $4,000 in a savings account and $320,000 in an investment account, but I try not to touch the investment account.

I’ll ask you about your investments in a minute, but let’s talk about savings first. Do you feel comfortable walking us through how much you’re pulling from savings every month?

Sure. This month was $3,000. It’s usually closer to $5,000, but sometimes I’ll go through a month without taking anything because I haven’t spent the whole $5,000 from the month before.

Where does that money go? Do you track your spending in any way?

My biggest expenses are rent, tuition, and travel. Rent is $1,800 a month when it’s just me in the apartment, which has been the whole year because I had a subletter who never paid rent. Tuition and travel are sporadic enough that it kind of depends on the time of year. Travel was really expensive around Christmas. I think I spent over $10,000 to go to a fancy resort in Europe with my family. It was incredibly fun.

I didn’t really prepare for this interview so some of my answers are closer to guesses. I grew up rich and didn’t really learn how to handle money, and generally I’ve been spending money without thinking about it until I recently realized I had to stop doing that. The weird thing about growing up rich is that I was taught not to talk about money at all, and I think that somehow extended in my mind to planning about it too.

Never?

Yeah, pretty much.

Oh, interesting. Like, you should just, say, order the wine you want at a restaurant and then worry about the price later?

Yeah, or never worry about the price, now or later, and appear as if you never think of it at all. Old money is especially like that, and I grew up very old money. So in order to better take care of myself financially, I have to kind of reset the way I think about money.

Do you know anyone else doing this kind of reset? Or are you mostly dealing with people who either are still in that old money mindset, or never had it to start with?

Definitely the latter. All my friends will totally understand if I decide not to do something because I’m cutting costs, since most of them never grew up that way or had much money in the first place. But if I used that as an excuse to, say, not go on an expensive trip with my family, they would be very upset.

Oh, I see. So that would be a more difficult conversation because it would sound like you don’t want to go, not like you can’t afford it?

Yeah. They either wouldn’t believe I couldn’t afford it, or they would think I’ve been so irresponsible with my money that I’m now broke. Even though not wanting to do an expensive thing is exactly my attempt at preventing that.

Oh, man, that’s like a lose-lose situation! How are you navigating that? What are you going to do this Christmas if there’s another $10,000 resort trip planned?

I’ve already suggested we go somewhere closer for other reasons, like having more time together. We’ll see how it goes.

Good luck!

Thanks!

Can you talk a bit about where your savings came from?

Yeah! I inherited about $375,000 when my father died. I also have his car. It’s old now, but still chugging along. I love that car; it’s the car he taught me to drive in.

How much of that original $375K is left? And where is the money parked now?

I put $250,000 of it into an investment account. The remaining $125K went into savings and helped me cover four years of living expenses, including one year when I had a relapse and was in treatment and recovery for the full year. Right now, the investment account balance is about $320K.

So the $320k includes growth on that $250K?

Yeah. It actually went up to $340K at its peak, but with the trade wars the market has not been great. Growth includes ups and downs, though. I have an investment broker who handles it all for me and I only check on it sporadically. I don’t touch it.

It feels kind of fucked up that just owning money means you can make more money by doing nothing, but I’m still incredibly grateful for it.

That is exactly how capitalism is supposed to work, but I think it’s okay to feel a little ambivalent. And you’ve got a lot that this money might need to do, right? You want to keep a nest egg for growth, but you might need to draw on it in the future — living expenses, you have an expensive health condition, what about giving and family?

Well, I want to be able to keep donating to charitable causes as long as I have the budget for it. I mean, I’m definitely not planning to stop my monthly donation to Planned Parenthood, for example. I’ll cancel my subscriptions to the Boston Globe and the New York Times before I do that. I live in a state that has really good health care right now, which means I get my mental health services for free, which is amazing. It’s awesome and I wish everyone had that.

My physical condition requires an out-of-state specialist, but since I’m in remission right now it hasn’t been expensive.

You said you haven’t really tracked your spending until recently. What changed your mind? And what are you using to track?

Well, in September I had $66,000 in my savings account [left over from the money put in after the inheritance]. And it seemed like it would last forever, so I just did whatever I wanted. I mean, besides the Christmas trip I didn’t do much that was really expensive: just paid rent, ate out sometimes, took the train to visit family for a few weekends, and bought video games and books when I felt like it. But with that combined with my regular expenses and tuition, I now have $4,000 left.

So that’s about $62K spent in about ten months.

Yep.

I can see how that would be a pretty big wake-up call. How are you tracking your spending now? Both in terms of, how do you do it logistically, and do you set limits for yourself?

Step one is saying no to travel and thinking about big expenses and generally eating out less. I signed up for Mint a while back, but I’m going to switch to You Need a Budget. A couple of weeks ago, I went through my bank statements and looked at every expense, and I realized I needed to keep doing that.

Did anything surprise you when you went through them?

Well, for one thing I had forgotten to actually pay some of my utilities for four months. I thought I’d signed up for autopay but I’d actually just signed up for online billing, so I wasn’t getting paper bills but I also wasn’t paying them. So I fixed that right quick. The other was that I was spending a lot of money on charity causes. I hadn’t organized or budgeted that, but was spending money on various GoFundMes and reparations groups and immigration causes.

I think I spent $500 in one month on the PayPals and GoFundMes of various individuals who posted to Facebook saying they needed money — people I know personally and people who posted in the various disability and antiracist and queer groups I belong to.

I always felt like I have money because of a long history of white and class privilege in my family and I should share as much as I can, but as things in the country went downhill politically I started to get a little out of control. I still feel like I don’t do enough, but I’m going to try and figure out other ways to give back.

It can be hard to find a balance between doing enough and wearing yourself too thin.

True, and as someone with a chronic illness and a limited amount of energy, I’ve always felt like money was the resource I had the most of. You know, they say you always pay somehow — if not with money then with energy or time or emotional or physical labor. I would often take Lyfts when I could have taken the bus, donated to causes instead of volunteering, etc.

Have you mostly paid with money? I feel like you’re often busy with political things.

No, you’re right. I edit an online magazine for free; I go to events. I do a lot of personal emotional labor for the people in my life, especially helping students at my school navigate the disability office. I’m active on grief support groups on reddit.

That doesn’t sound like you’re usually paying it with money, honestly.

Yeah I guess that’s true, but you know how it is. Things never feel like they’re enough, and when you’re stretched thin in all the ways, money helps a lot.

Can you talk a little about how you help people navigate your school’s disability office? That sounds very difficult.

My school’s disability office is terrible. They actually lost a lawsuit to the ACLU right before I started there because of their refusal to offer accommodations. Even though they were legally required to change their policy, they still haven’t changed it in real life.

For some background, you’re disabled as well — you have a chronic illness.

And I have some knowledge of disability theory and years of navigating undergrad and my first master’s degree with a lot of chronic illness, trauma, and mental health problems. So I became the go-to person/unofficial advocate for the various people in my program who have disabilities. For example, my friend with diabetes was told by the disability office that she’d have to plan her low blood sugar in advance, and my friend with a learning disability was called out in front of the whole class for not taking notes.

We talk about it with each other, and I prep them before their meetings. Sometimes I even write emails for them and talk to professors with them. But most of what I do is change their perspectives on themselves so they start to believe that they deserve to be accommodated and that getting what they need to succeed is not special treatment. Having a condition isn’t weakness or being spoiled.

People often tell me about their problems because they know I’ve dealt with a lot myself, and I kind of slowly work on them and talk about what I’ve learned – the social vs. medical model of disability, the fact that illness isn’t a personal failing that we have to make up for, but instead something we deserve help with. I kind of slowly disassemble the shame people have internalized, partly through dialogue and partly through example.

Do you want to define the social model of disability real fast? That’s similar to how I’m sort of disabled because I am pretty near sighted, but since society is really quick to jump on the glasses train and they’re easy to get and no one ever makes me take them off, it doesn’t functionally impact me?

Sure! And that’s definitely an example. Most people grow up with the medical model of disability that says, for example, that a person who can’t walk and uses a wheelchair struggled because of their disability, and fixing it would be finding a cure. The social model says that not being able to walk is only a disability in a society that has stairs everywhere and doesn’t provide ramps or elevators or door-handles and light switches at easy-to-reach levels. Disability is a valid difference that doesn’t in itself keep a person from succeeding; in an ideal society those differences would be accommodated. 

Of course, it’s not totally black and white — people deserve medical care, treatment, and cures in addition to elevators and signs in Braille. But too often disability is looked at as a personal failing, and that view is used as an excuse to not push for society to be as equal as it could be. Assuming that a disabled person wants to be able-bodied more than anything is a disservice to that person.

Getting back to your money — I want to talk a little about the future. It sounds like you’re going to be cutting down on expenses (new roommate, saying no to travel, checking in on big expenses, less eating out and giving), and you’ll be keeping a closer eye on your finances. Do you regret not doing this earlier? Or do you feel pretty good about what you’ve spent it on in the last year?

I regret it a little, but I also am okay with the fact that it took me this long.

You have to meet yourself where you’re at sometimes.

Exactly. It would have been way more convenient for me now if I had been better with my money earlier, but now is the only thing I can control.

Long term, what do you think your earning potential is going to be? Do you picture yourself writing and continuing to advocate? Those are not high-paying jobs — didn’t one of your teachers suggest you all get rich husbands?

LMAO, yeah. I’ll write and find some kind of job to pay the bills, hopefully something that has some structure and allows me to work with kids. I have one more year of school and the scholarship to cover that; with my health it’s just not possible to work and do school full time. So for the immediate future, I’ll do my best to live more simply and stay within my scholarship and savings account. I’ve been sending out my resume and starting to network in my field, and I’ll pick up the pace on that in the spring. If I need to, I can take money out of my investment portfolio — and I might need to do that if I have a health scare.

But I’ll find a job when I graduate even if it isn’t one I like.

So not super high-paying jobs, but you also won’t be living as extravagantly now.

Unless I have another relapse. Then I’ll be living a lot more extravagantly.

Do you mind giving a ballpark cost of what a relapse might cost you? Lost wages? Travel to the doctor? Treatment?

When I relapsed two years ago, it cost about $30,000.

That’s so much.

My mom helped me out with some of it, which was very helpful. Even with insurance, there were a couple of emergency room visits that cost about $8,000 each, three surgeries, eight months of expensive medication, and a home nurse who came by every week.

Plus, you weren’t working at the time, right? That’s like most of your energy/time right there, just getting better.

Yeah, I was more or less totally unable to work, which was unfortunate.

Have you thought about if there’s a point at which you are financially independent and wouldn’t have to bring in more money? Like, is there a point where you can live off your investments forever?

I haven’t thought that all the way through, it almost seems like it would jinx it? There are so many reasons it might not happen. But if it did, I know exactly the life I would want. It’s the life I want anyway.

What’s the life you want?

I want to be a writer and spend my days working or volunteering in ways that make me happy, either with kids or at a botanical garden. I’ve done both and I loved both. And I want to be a foster parent. If I had enough money that I could donate all my time to writing and raising foster kids, with enough money that I could pay for their and my mental and physical health expenses, that would be my dream. Ideally with the ability to travel sometimes and go out to eat and do other fun stuff.

That’s a pretty good dream! And I think eventually achievable with the nest egg you’ve got? Have you thought about talking to your broker about that?

Yeah, I need to talk to them anyway.

Finally: What advice do you have for Billfold readers?

I guess, when your friend tells you you should probably get a budget, listen to them before your savings account makes the decision for you?

Hahaha, is the friend me?

Yeah, of course the friend is you, goofball.

Also, don’t be afraid to acknowledge what you don’t know. Don’t let shame get in the way of doing what it takes to help yourself.

Emily Jacob lives in Boston with a roommate and a cat. She saves a lot of money by using the library, and then spends it on library fines.

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