How Much Does Lupus Cost Me?

A part of lupus that no one ever seems to talk about is how living with a chronic illness impacts your finances. Conversations about how much money you make or spend can be taboo. But the financial reality of lupus is just as valid and impactful as the physical realities of fatigue and joint pain. Every lupus patient must consider finances. So what is the true financial cost of lupus? Here are some things I spend money on as a lupus patient:

Health Insurance Marketplace Costs

Because I’m not able to work full time, I purchase health insurance off of the Affordable Care Act Marketplace. I have to get the more expensive Gold or Silver level plan in order to cover the specialists and medications I need. My monthly premium is $300. This price reflects a $100 tax rebate.

Hidden Costs of Non-Medical Aids

Two summers ago, I began to feel the sort of endless, intense fatigue that signals the start of a flare. I was eating healthy, going to bed on time, and limiting stress in my life. As it turns out, the trigger for this particular flare had been hanging over my head for a long time: it was the sun! Twelve years after my diagnosis, I’d suddenly developed photosensitivity. So that I could drive safely, I had to get my car windows tinted with a special ceramic tint that blocks 99% of UV rays. Insurance did not cover this $750 expense.

Most patients must buy non-medical items to make life bearable. Unfortunately, insurance rarely covers these. These may include small purchases like orthopedic shoes, ice packs, or over-the-counter pain medication or sleeping aids. It also might mean bigger purchases, like a special mattress if joint pain makes sleeping difficult.

Prescription and Supplement Expenses

Monthly prescription costs run about $130. Every week, I take about 90 pills. These include two types of immunosuppressants, a heart medication, a sleep aid, and the first medication most lupus patients are prescribed: hydroxychloroquine. Vitamins and supplements cost an additional $50-60 monthly.

The Cost of an Anti-Inflammatory Diet

I sometimes joke that my body is a barely functioning car that needs premium gas to run. My diet is far healthier now than before my diagnosis. Fresh vegetables fill my cart. They cost more and spoil faster than the canned ones I used to buy, though. Since spontaneously developing lactose intolerance, I also purchase coconut and almond milk. Additionally, I follow a strict carb-free and sugar-free diet. This manages the insulin resistance caused by my steroid treatments. Buying natural peanut butter, protein powder, nut-based milk, and stevia instead of regular sugar adds up!

Paying for Out-of-Network Specialists

ACA health insurance has never covered my rheumatologist (lupus specialist). She charges me a reduced rate of $90, which I pay in cash every time I visit. During one severe flare, she ordered a steroid infusion. Because she is out-of-network, my insurance refused to cover it. I paid $500 for the infusion.

Clothing Costs Due to Weight Changes

Because of the steroids I take, I typically gain thirty pounds after each major flare. Then, I spend the following year working hard to lose the weight. I have four different sizes in my closet. Since I’ve been sick for fifteen years, I rarely have to buy new clothes anymore. But when I did, I would usually buy them second-hand at Goodwill. Dresses and shirts cost about $8 each. Thrift store clothing offers the advantage of being more durable than regular clothing. Not to mention thrift shopping can feel like a treasure hunt. You never know what you will find!

The Cost of Lupus

Living with this disease means navigating a constant balancing act between physical health and financial stability. While the fatigue and flares are difficult, the financial stress can be just as exhausting. By sharing these numbers, I hope to shed light on the true cost of lupus. This is not to complain, but to validate the experience so many of us share silently. Managing our health is a full-time job, and managing the expenses that come with it is a reality we shouldn't have to face alone.