12-Year-Old With Juvenile Arthritis Opens Up About the Loneliness of Living With Chronic Pain

Juvenile Arthritis chronic pain Jessica Rhodes Rheumatology Department at SickKids world's leading center for arthritis normal childhood Tanya Rhodes Edinburgh Children's Hospital Charity Pippa Johnston childhood arthritis arthritis in children arthritis

By Lili Scott , Parent Herald Jul 02, 08:20 pm

Photo: (Photo : ERIC FEFERBERG/AFP via Getty Images)

Arthritis usually starts showing symptoms by the time a person is 40 years old but Jessica Rhodes, 12, began feeling unusual aches and pains in her body as a toddler.

She was only seven years old when doctors confirmed she had juvenile arthritis. For the last five years, Jessica, from Scotland, has been in and out of the Rheumatology Department at SickKids, the world's leading center for arthritis in children.

Doctors have been trying to control Jessica's chronic pain with medications, injections, and invasive treatments. She recently opened up about the loneliness of having this long-term illness, which has not given her the chance to experience a normal childhood.

Speaking with Edinburgh Evening News, Jessica said she missed many school days because of her condition. She could not join typical activities with her friends nor enjoy her hobbies because playing basketball or holding a musical instrument meant she would be in pain the next day.

Jessica's challenges with juvenile arthritis

It was obvious to Tanya Rhodes, Jessica's mother, that something was seriously wrong when her daughter complained of a sore wrist when she was still a toddler. Jessica's hand turned blue, so Tanya took her to the doctor immediately.

Blood tests showed that she was suffering from hypothyroidism and was prescribed medications. However, when Jessica developed swollen knees after a month, her doctor endorsed her to a rheumatologist.

The rheumatologist said that Jessica might be suffering from a post-viral reaction, but this did not explain the inflammation in her eyes. More tests confirmed Jessica's condition. Apart from her arthritis diagnosis, Jessica also suffered from the occasional bouts of uveitis or inflammation of the eye. Her doctors were worried because the condition could make her blind.

For the first few months, Tanya had this unsettling feeling.

"I had no idea children could have arthritis," she said, per Need to Know. Their family learned about the different types of arthritis, which required different medications.

As a young child, Jessica did not know why she had to get tests so many times, but she tried to be brave, knowing it would help her feel better. However, she was also scared because she had to try different medications. Some of her treatments provided relief, while the other medications gave side effects she could not tolerate, such as mouth ulcers.

By 2019, Jessica was dealing with intense muscle spasms that made walking too difficult, so she had to use a wheelchair. She needed her pain relief almost every day.

Tanya said that it took some time for doctors to find the right combination of medication for her daughter. It was not just the girl who struggled because her disease caused an upheaval in the family.

Jessica learns to manage her health

Jessica's mother had to quit her job to take care of her daughter full time. However, Tanya said her daughter rarely complains about her condition. Over time, Jessica has learned to manage her health better.

Today, Jessica is an endorser of Edinburgh Children's Hospital Charity (ECHC), which sees over 110,000 children suffering from different kinds of serious diseases every year, per Daily Record. ECHC Director Pippa Johnston acknowledged that being in the hospital can be a lonely experience for the children, but they are finding ways to change this mindset, as well as mitigate the long-term effects of the loneliness on the kids.