How a Chronically Ill Person Does Money

Fireproof

When I was 13, I was diagnosed with Crohn’s disease, a chronic inflammatory condition of the gastrointestinal tract, and from that point on nearly all of my major life choices have been made with it in mind, including picking a college major that would result in a job with health insurance.

I’m the first person in my family to earn a college degree. I was a good student who took the advanced courses offered at my high school, but dealing with a chronic illness didn’t give me enough time or energy to reach the top of my class. I missed over 30 days of classes in one year, and the school district tried to force me into their home school program. Wanting to be able to live the same kind of life that any other teenager would live, I fought this and was allowed to return to school and work with my teachers to make up my work.

I made the decision to move out of my parents’ house for undergrad, but my choices were limited between two in-state schools due to financial and medical considerations. One school offered early admission, so I paid that single application fee and was accepted before the application deadline at the second school. My college was a two-hour drive from home—close enough to be easily accessible in an emergency, but far enough to have a decent go at spreading my wings. My middle class family wasn’t able to qualify for need-based programs, and my grades weren’t in the top percentage needed to win a lot of scholarships. I ended up taking on about $30,000 in student loans, which is an amount that is probably comparatively reasonable, but makes me want to barf when I think about it now. In high school I loved art and drama, but knew the life of a starving artist wasn’t compatible with a life of chronic illness. I needed a job with sick leave and health insurance, so I opted for a degree in graphic design.

I’ve moved back in with my parents multiple times: Immediately after graduating, when I worked at a grocery store bakery for a few months while trying to land a full-time job; when my Northern Virginia roommates were moving on and I was hoping to change employers and afraid to commit to another lease in the area; after four years of home ownership in a townhouse larger than their own home.

Yes, I bought my first home when I was 27. This was such an amazing accomplishment for me: being able to afford it on my own, reaching this milestone at a younger age than my own parents. At one point, when my dad was in the middle of a long stretch of unemployment, we discussed plans for my parents to move in with me. Then I was laid off from a struggling company before I could jump ship to another job. My auto-scheduled mortgage payment went out on the very same day I was let go. I had tried to get mortgage insurance when I bought my home, but was found ineligible due to my pre-existing condition. Unemployment payments would cover COBRA health insurance or the mortgage, but not both. The choice here was easy, but still sad—I called a realtor to put my home for sale at a loss. It was quickly under contract with an investor who paid cash and about $100,000 less than what I’d paid four years earlier for it. My credit took a hit, but luckily I didn’t have plans to for any large purchases for a while.

My entire life, I’ve focused on increasing my earnings for two reasons: I knew I would have higher than average medical bills (both monthly recurring and emergency), and if I ever needed to go on disability, the payments would be a percentage of my income, so in order to have a shot at surviving that situation, I needed a bigger income going in. I do everything I can to get promotions and raises. Over a few years I convinced my previous employer to create a management trainee position for me. During that same time, I spent four years going to night school for my MBA.

After 10 years as a graphic designer in the private sector, I used my unemployment to switch to a job with the Federal government. In D.C., being a federal employee usually means taking a pay cut, which is difficult for me. But it also offers stability and work/life balance that I desperately needed. For the first time ever, I have separate leave for vacation and sick time, and get to bank comp time for hours worked over 40. I have a retirement savings account and a pension.

I stayed with my parents for over a year after getting my job, commuting a crushing four hours each day. I went to work, commuted, and had about one hour of free time before I had to go to sleep to start the cycle over again. (My health makes sleep critical, but really everyone should get a good night’s sleep.) This situation was terrible, but I just couldn’t afford to move to D.C. at my starting salary. Asking friends for advice was tricky because most didn’t understand the way my illness impacts my budget or my living needs.

My monthly budget includes student loans, along with recurring medical bills (prescriptions, scheduled doctor appointments, medical supplies) and the unknown, but likely, “emergency” medical expenses. In D.C., it’s common for unmarried people to live in group houses with lots of roommates. I spent more to live alone in a one-bedroom apartment just over the D.C. border, because having roommates can be difficult: my immune system is crappy, I’m a light sleeper, and stress is a big trigger for flares. Parking costs $125 a month to keep a car in a city because I have a lot of anxiety, and it’s the most comfortable way to get around most places aside from work.

Even though I understand its importance, my savings are basically nonexistent because of the health issues, and those issues make getting a part-time job nearly impossible. I feel like I am a hustler at heart—working since I was 15, helping out with a friend’s winery, or baking to earn extra cash. Since I moved to the city, I’ve been using Gigwalk to supplement my spending money.

Despite all these challenges, I still feel that I’ve been incredibly lucky. I have parents who are hard workers and have always allowed me to move back home. My mother is a great caregiver and supporter who will often send me off with frozen dinners, or Costco gift cards. For her birthday this year, she bought me a swimsuit. She’d never let me go hungry. Most of my other relatives live far away and we are not particularly close. The idea of my mother dying fills me with anxiety, because of the emotional reasons of not knowing how I’ll get along without my best friend, but also because she’s really my only consistently reliable safety net.

Last year, I spent approximately $5,500 on medical expenses. This is a pretty standard amount. In 2013, I didn’t have any surgeries or prolonged periods where I was unable to work. In 2005, I had a serious surgery that left me hospitalized for over three months and unable to work for four. As a salaried employee for a small employer that didn’t offer disability insurance or qualify for FMLA (unpaid, job-protected leave), I was not paid during this time, but my boss agreed to keep paying my health insurance and my position was waiting for me when I was healthy enough to come back. This happened at the best possible time, since I was still living with my parents and essentially only had a car payment.

The IRS says, “you may deduct only the amount by which your total medical expenses exceed 10 percent of your adjusted gross income.” I’ve only been able to meet the IRS threshold once (the percentage used to be 7%). That’s a lot of money. It’s not like you get a discount on food, housing, or clothing just for being a sick person. It’s more likely that you space out visits to your specialist, put off dental work, or skip doses of medications.

My credit card debt is growing. Even if I were able to save, I’m not sure it would ever feel like “enough” because I know all too well how easy it is to be too sick to work, and how hard it is to qualify for and survive off of security net programs (I have a lot of sick friends). When I feel like I have extra money, I’m compelled to share it with a few of my friends, like the one who has been unable to work for years and can’t afford her medications without monthly reliance on friends.

I’ve also been working as a health advocate for a few years, and the cherry on top is that I’m asked to pay my own way to conferences that advertise the inclusion of patients as a draw for other attendees. I’m trying to help people understand that $200-$1,000 is really a lot of money for patients who don’t have jobs or universities that will cover their travel and entrance fees. This year, I had to beg friends and family for donations to cover the $1,200 I need to make it to a conference.

Some of the problems caused by chronic illness can be alleviated with money. Housekeepers, take-out, car services, massages, well-made shoes. All these things are expensive, although I do splurge on take-out (or prepared food from Whole Foods) a couple times a month and will pay a pretty penny for sturdy black leather orthopedic shoes. I’m 33 and my shoes are probably uglier than your grandmother’s.

After 10 years of professional employment in the private sector, I had about $25,000 in a retirement account. Most of my jobs offered matches, but I didn’t meet the vesting period in some cases. My current job offers the holy grail of modern employment: a pension. While it’s not as good as the plan offered in the past, its existence is basically a miracle to me. We are taught that our retirement will be funded in three ways: the pension, Social Security (which, lol), and our Thrift Savings Plan (the federal government’s version of a 401(k)). My employer matches my contributions up to 5%, so that’s the amount I contribute at the moment. After a year and a half at my current job, my retirement account is worth $35,000 (after rolling over my old funds).

When I do have money, it’s difficult to know whether to pay down debt, or splurge on fun things. My medical condition is not strictly degenerative, but the last 20 years has had a lot more downs than ups and the risk is real that my need for additional surgery will outpace the development of effective treatments. As someone who hopes to travel more before my health declines further, it’s sometimes hard not to put a plane ticket on my credit card and go out and live life a little bit.

The worst thing about having a chronic illness is that I don’t know what the future holds. I’m due for a significant raise in February that will make my rent comfortable instead of just feasible. My struggling, old laptop should be replaced next year. My car will be paid off within two years. I understand more than most, that those expected gains could disappear in an instant if my health declines and I’m unable to continue working.

 

Carly Medosch works for the Federal government in Washington, DC by day, and as a chronic illness advocate when she’s not sleeping. You can read her blog at or follow her on Twitter. She will next be seen at Stanford’s MedicineX conference September 5-7.

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7 Comments / Post A Comment

This article makes my heart ache. But it seems like your trying to strike a good balance between enjoying your life and managing your finances around your diagnosis. Good luck to you and good health.

mbl (#5,203)

Carly, hang in there kiddo.
Your article really gave some good insight into someone living with a chronic illness. You seem to have made some good choices to aid in building a nest egg and preparing yourself for the down times.
Kudos to you and prayers sent your way…all the best.

VelourFog (#5,077)

@mbl Thank you so much!

holly (#6,785)

Thanks for sharing. It’s ridiculous to me that you have to struggle so hard to meet a basic minimum of existence and I wish that wasn’t the case. I was at a startup thing a few months ago and we were, of course, talking about employment and someone asked what it would take for me to quit my job and join a startup. I said “health and dental”. They thought I was joking. I hope you can keep your job or move up within the system for a good long while.

VelourFog (#5,077)

@holly Hi Holly, OP here. Your comment made me laugh because I once tried to negotiate for short term disability instead of a raise at one of my jobs. We didn’t get it, and my supervisor though I was a lunatic who didn’t understand business at all.

Thanks everyone who has commented here on on Twitter. I appreciate the support and good thoughts. This is just my story. There are a lot of other people who have it much worse. Write your Congressperson!

Derbel McDillet (#1,241)

It is so frustrating that FMLA only applies to companies with 50 or more employees. I understand from an employer’s perspective, but as an employee, it makes zero difference to your situation how many coworkers you have.

AfternoonNapper (#7,572)

I am 34. I have been professionally employed in my sector since I was 17. Before that I shoveled out stables where I took horseback riding lessons. I too was sick throughout high school, went to college sick — undiagnosed and thus without treatment — carrying high-grades but no scholarship. My mother went back to work to help pay for my tuition. I worked internships every summer to improve my job prospects. I was a graphic design major.

After college, my first job was at a newspaper. I made so little that saving wasn’t even an option. I couldn’t pay for things on my own, save for my rent, which was $450 and the basics of gas and food (I worked too much to ever worry about entertainment). My parents’ charity — as I am an only child — supported everything else. They grew up struggling and did their best to make sure that I had an easier financial row to hoe than they did. And indeed it was. I had a certain security that I would never truly be without.

However, that does not mean that I have been WITH. After leaving the newspaper job, I was forced on to COBRA, and then into an individual insurance policy as my next job did not provide insurance — of any kind. I have remained with that company for 11 years now and thus an individual policy. I worked full-time for the company for years, and then my health forced me into months of not working. When I could work again, my job did not exist as it had, and so I cobbled together three separate jobs in order to be a contributing member of my married household. When debt rose, I even pawned my belongings.

Being married does not necessarily make paying for healthcare easier. My husband works at the same company I do and thus also does not have company-provided insurance. We have each have a company 401K with convoluted match that can best be described as better than nothing. We each have IRA investments as well. And we do not have $35,000 in them between the two of us. Though we own our house, if one of us were to suddenly lose our job or die, the other would be unable to pay the mortgage alone.

I stay with my current job not because of what it pays but because I am good at it, it allows me the flexibility to address my health as needed, and I may to pursue the things I care about — such as advocacy work. I imagine what it would be like to have the things you do with your job now — insurance, pension, holidays! I also imagine what it will be like when my parents die and the one safety net I’ve had in life is no longer there. And frankly I have imagined that it would quite possibly be better for my family if my death alleviated the current and future financial burden of my existence.

You mention having to beg for funds from family to attend a conference, and the insinuation is that this is somehow an ignoble thing to do. Having received support from friends and family for many things over the years, I disagree. My first foray into crowdfunding was in order to pay my way to a graduate studies conference at Georgetown. I baked bread, sold herbs and flower bulbs from my garden, and sold my vintage Nintendo, which was the first thing I ever bought on my own. When I’ve gone to other conferences, I’ve orchestrated room shares with two other roommates or stayed with friends. When I wanted to go to conferences at which patients weren’t invited, I negotiated to be admitted at student rates. When I started an organization, I crowdfunded $5,000 in seed money. And I crowdfunded my way to a narrative medicine course at Columbia. There has never been a single advocacy event I have attended that has not incurred some expense resulting in some kind of hardship. All of these things were opportunities that I decided to pursue, so I do not begrudge the entities that required payment or that had limits to discounts they could provide to me. This is, after all, business. Have I ever been told that crowdfunded money was no good? Absolutely not. And I feel nothing but honored as friends, family members, and complete strangers contributed to my cause because they believed in me. And no matter how small a contribution was made, I never looked a gift horse in the mouth because I understood proportional giving and that someone’s $5 may equate to much more value than another’s $500.

Ultimately, chronic illness patients are presented with greater challenges in life and must accept the reality that things don’t always turn out as we had expected. This is not what I thought my life would be like. But I am happy with how my life is because I am getting to make a difference — and that is worth it to me, even though I will not receive a significant raise next year, even though my car will not be paid off, even though my laptop is company owned, and even though my future and my health are uncertain.

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