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.