The High Price of Arthritis

By Jill Tyrer | Feb. 22, 2024

Tessa Wilson’s honeymoon was unforgettable — but not in the ways you might think. She barely had bandwidth to celebrate her new marriage because she also had a new psoriatic arthritis (PsA) diagnosis.

“We weren’t even allowed to enjoy being newlyweds because I immediately got sick,” she recalls. “I was on medications when we were on our honeymoon. I was in so much pain I would have to go to the emergency room just to get pain relief — if I could get pain relief.”

A high-pressure work project combined with the stress of planning her wedding had brought on shingles, which in turn activated PsA, she explains. She had been dealing with symptoms for about a year and a half before she was diagnosed in 2019.

Childhood Interrupted

This wasn’t Tessa’s first experience with joint problems. She was just 8 years old when she was diagnosed with a rare condition that cut blood flow to her hip bone (called Legg-Calve-Perthes disease). An enthusiastic soccer player at the time, she kicked the ball at one point and her hip shattered. For the next 20-plus years, until she had hip replacement surgery, the top of her femur served as the ball of her hip joint, which accelerated joint degeneration and the onset of osteoporosis.

By the time her hip was replaced when she was 29, “the head of my hip was almost rectangular shaped, and because of that I had nine different bone spurs in different spots. Needless to say, it was very painful,” Tessa says. In addition, a slight difference in the length of her legs led to arthritis in her spine.

A Financial Price

Her arthritis journey has been a pricey one. Lacking insurance, she was charged $40,000 for the hip replacement surgery. Fortunately, after a number of sleepless nights, she was able to secure some assistance from the hospital.

She now has good private insurance through her husband’s employer, but her psoriatic arthritis medications are very expensive. She tried a number of different disease-modifying medications over the years to manage her PsA, including several biologics, before finding an infusion in 2023 that worked for her. But, about six months after starting the infusions, she got a bill from the infusion center saying she owed it $12,000.

“I had nothing shy of a panic attack. After looking at the itemized receipt, [I realized] that was actually for one treatment,” she recalls. “In the moment, it is so stressful. I can’t really put into words what it’s like to receive a bill that high.”

Much to her relief, she was able to significantly reduce the out-of-pocket cost through co-pay assistance through the manufacturer, which is available for most biologics and other expensive medications.

“Receiving that bill really shook my foundation because it really put into context for me how things could get. I absolutely understand how people are filing for bankruptcy, mortgaging their homes, selling their cars, whatever they are doing in order to afford having just basic needs met,” Tessa says. “It’s distressing to say the very least, especially when you’re dealing with a type of illness where stress is such a huge component of your wellness. It causes a huge flare pain-wise, fatigue-wise. So just trying to just live an everyday life can be very difficult and costly.

Her PsA sometimes leaves her deeply fatigued and in pain, and she’s lost income as a result, either because she wasn’t able to work or because of inadequate benefits under previous employers. Tessa is grateful that her current employer is supportive and flexible, and encouraged her to file for Family Medical Leave Act protections. “If I need to take time, they’re like ‘Take the time, don’t worry about it,’” she says.

Quality of Life Cost

The physical impacts of psoriatic arthritis have taken a toll in numerous ways — including her quality of life. She deals with the most pain in her hands and her lower back, which makes standing for long periods difficult as well as work activities like typing and daily activities like opening packages and walking her three dogs. 

And while she still makes a point of doing activities for fun, she knows she will pay for them later with pain and fatigue. She and her husband love to go to concerts and music festivals, “but it’s hell on my body,” she says. Even short trips require a lot of planning to make sure she gets her infusion well in advance to control her symptoms while she’s traveling, as well as corticosteroid injections to manage her back pain. And she travels with her arthritis “first aid kit” of medications, pain-relief patches, compression gloves and socks and other items to fend off pain and stiffness.

“Even just to have a little pleasure or fun in your life, you have to jump through all these hoops,” she says. “We’ve been talking for years about doing a month-long trip to the U.K. but it’s just not possible.”

Emotional Toll

“The biggest toll it takes on us is really emotionally,” Tessa says. “We just don’t know what it’s going to be like day to day. Some days I’m fine, and on a fine day, my pain might be at a 4, but I’ve gotten used to it at that point so I can still do stuff – I can help do laundry, we can take our dogs for a walk. And there are other days when I’m just doubled over in pain and in bed,” she explains.

“I hate the fact that I wake up in the morning and the very first thought I have is assessing how much pain I’m in. I really miss the days when that wasn’t a thing. You go through a full grieving process without a doubt,” she says. 

Her husband has known her since before she was diagnosed and she sees his frustration, too. “He’s like, ‘I just want you to feel better.’ And I’m like, ‘Dude, same!’” she says.

“I just think the everyday average person has truly no idea just how expensive just trying to be well is for us,” Tessa says. “We just want to be able to walk our dogs, we just want to be able to cook a meal, do laundry, go have dinner with friends, whatever that looks like — everyday things that so many people take for granted. There’s just such a cost to it.”