Lupus and Personal Finance

Making money when you are chronically ill can be a challenge. It is not easy maintaining a job while dealing with achy joints and fatigue. It can also be difficult to take time off of work for doctors' appointments, and major flares can interrupt your career plans. According to one study, 55 percent of people living with lupus report a complete or partial loss of income due to their disease.¹

Due to fatigue caused by my illness, I’m not able to work full time. I am lucky that my part-time work, teaching violin, and viola lessons, is enough to pay my bills and pad my savings account. Because my disease can often be unpredictable and out of control at times, having an emergency fund is extremely important to me. Most experts in the field of personal finance agree that a 3-to 6-month emergency fund is enough. However, I once spent a year and a half out of work due to a severe neurological flare. Because I tend to have serious flares that last a long time, I get very nervous about not having enough money. I try to keep a year’s worth of living expenses in my savings account in case of an emergency. I’m very fortunate to be able to do this, and I understand that this isn’t possible for everyone, especially lupus patients who are not able to work. Here are the steps I took to build up my savings account:

I created a budget

Creating a budget is not as easy as most people think. We all wish we could just spend $150 on food each month, but unless you want an empty pantry or a diet of ramen and off-brand peanut butter, that amount isn't feasible. The best budgets are realistic, and they aren’t created overnight. To create my budget, I tracked my spending over the course of a month or 2. In the notes app on my phone, I listed my spending under the following categories: Food, Gas, Fixed Expenses (Rent/Mortgage, Internet and Phone, etc), Clothing and Gifts, Subscriptions. Then, I used the information I’d written down to create a budget. I’ve found that the key to a good budget is basing the amounts on previous spending habits.

I cut my expenses and subscriptions

When I first decided to get better at saving money, I took a close look at subscriptions I could cut. I got rid of a makeup subscription service and a few other subscriptions I didn’t need. Then I worked on reducing my food and clothing budgets by buying less meat and shopping for clothes second-hand.

I started a side hustle

When I was very sick and bedridden with brain inflammation due to lupus, I began writing because there was nothing else to do all day. As I recovered, my writing habit stuck. Now I write and sell essays about my experience with lupus. Writing has turned into my side hustle, or job that I do outside of my main job to earn extra money. The best thing about my writing job, aside from helping other people with lupus, is that I can do it with little to no physical energy.

I set a monthly savings goal

To build up my savings, I learned I had to pay myself first. Before I paid any of my monthly bills, I put a set amount of money into my savings account. If I was short on my bills at the end of the month, I tried my best not to touch the savings account. Instead, I’d challenge myself to make more money through my side hustle or cut my spending in a different area.

Not everyone has the privilege of saving money. But everyone can empower themselves by educating themselves about personal finance. Many resources are available for free on the internet, especially YouTube. We can’t always control our diseases, but understanding how money works can help keep us in a position to stay healthy and safe.