Amber Clark was 19 when she started a journey with an invisible illness. “I had pain and limited mobility in my left elbow. The doctors kept telling me it is tennis elbow and sent me away with some pain relief medication,” she says. One evening she couldn’t take it anymore and couldn’t stop crying.

“My (now) husband, Matt, drove me to an accident and emergency room. Finally, they investigated my elbow, and they x-rayed me and said it looks like arthritis. After that night, my life changed forever.”

A rheumatologist diagnosed it as arthritis, as “seronegative inflammatory arthritis,” which means they were unsure of what particular arthritis it is. The unspecific diagnosis made it difficult to treat.

Jaw trouble

Soon afterward, Amber’s other joints began to hurt. Next, severe pain in her jaw was wrongly diagnosed as a disorder that causes pain in the jaw joint – TMJ disorder. “I spent years asking medical professionals if the jaw pain is arthritis. They insisted it was “highly unlikely” because ‘the jaw is usually the last joint to be affected by arthritis’ and because I was still young. Finally, a doctor decided to listen and discovered it arthritis.” 

“I felt very frustrated after asking that question all along. The resulting chiropractic treatment for TMJ disorder made the deterioration of the joint and the pain worse.”

Amber’s condition progressed quickly, and she was soon on strong DMARDs, which slow down the progression of inflammatory arthritis.

“My doctor recommended we start our family because the medication can cause fertility issues with long-term use. We went on to have two wonderful, healthy boys, but not without incident,” she says.

Amber had chronic pain and fatigue during pregnancy and breastfeeding. “I was on very little pain relief and nothing really to slow down my deteriorating condition other than herbal pills. Once I weaned my youngest son from breastfeeding, I started my next journey of trying multiple medications until I found what worked for me.”

While Amber should have been on DMARDs but was not, her jaw joints had worn away, and she experienced mechanical difficulties such as jaw locking and extreme pain. Amber had multiple procedures on the jaw, including cortisone injections, arthrocentesis (joint aspiration), and a discectomy. A discectomy is the surgical removal of abnormal disc material that presses on a nerve root or the spinal cord.

Eventually, Amber was put on the public waiting list for a bilateral jaw joint replacement. 

“Three years on the list and my day finally arrived after my 30th birthday. It was extensive surgery, and I was under for nearly 12 hours. The first two weeks of recovery were brutal, but by week three, I could already feel improvement from how my jaw used to function. I’m 34 now, and it was the best thing I ever did. I was scared to have the surgery, and I had regular nightmares and anxiety before going into theatre. But, I would do it all again for the quality of life I have now.” 

While waiting for the joint surgery, Amber received funding for TNF inhibitor medication (Humira), which she self-injects fortnightly. It has worked wonders for her other joints, and her overall pain and mobility is a lot better. 

“I changed my home environment. My family and I moved from Auckland to Blenheim a few years ago. Blenheim has a dry and sunny climate, which is a far more suitable place for me to live.”

Amber says that living with an invisible, chronic illness is unfair. People who have a visible disability aren’t questioned when they use an accessible parking space. No one asks why they sit on the side-lines instead of getting involved in sports. People don’t judge them for forcing a screaming toddler to walk beside them instead of carrying him. And no one wonders why they need help bringing in the shopping. 

Everything has been a journey throughout the 15 years from Amber’s first symptom. The diagnosis, medication, and surgery were journeys. Raising a young family with a chronic, invisible condition was a journey and continues to be. Educating friends and family on her health is a journey.

“But isn’t that what life is? One big journey.”

Medical costs for arthritis amounted to $1 billion in 2018. Of that, a third were in-hospital expenses (public and private). A staggering 48% of people with arthritis are of working age, people with families and responsibilities, people trying to make a life for themselves.  

It’s just arthritis, but what about the cost?

Medical costs for arthritis amounted to $1 billion in 2018. Of that, a third were in-hospital expenses (public and private).

The findings in the recent Economic Cost of Arthritis in New Zealand report have significant implications for how the health system manages arthritis. Some key findings related to health care costs:

• Health sector costs related to arthritis were estimated to be $992.5 million in 2018, equivalent to 23% of total financial costs.
• Of this, an estimated one third is attributable to hospital inpatient costs ($321.0 million). Public inpatient costs were estimated to be $244.0 million, and private inpatient costs were estimated to be significantly lower, at $77.0 million.
• Residential aged cared costs related to arthritis were estimated to be $97.9 million, while arthritis-related pathology and diagnostic imaging costs were estimated to be $96.4 million, and pharmaceuticals costs were estimated to be $69.5 million.

Arthritis can affect anyone at any age, and new figures released in 2018 reveal that more than 670,000 people in New Zealand have a form of arthritis.