Teen spreads arthritis awareness

The Dartmouth Community Health Board’s Community Leader Award this month has been given to someone who is planning her life around helping others.

Taylor MacDonald is barely 18 years old, but for the past five years she has been living with the pain of arthritis, a chronic illness that is usually associated with old age.

She knows the pain, frustration and helplessness of arthritis. But she also has a plan to make life better for those suffering from the illness.

“I want to connect with other people with arthritis — young people especially — and help them navigate through things you have to deal with when you have arthritis, real life things like how to educate teachers about your condition, how to cope and how to come out the other side.”

Her idea is to compose an instructional package about juvenile arthritis.

A manual that will explain, educate and tell the truth.

She wants the manual to be required reading for teachers and professionals in the community who deal with kids with arthritis.

And, eventually, she wants to start a support group. She hasn’t figured out what that would look like yet but is taking the time to figure it out.

It’s what she knows and she has a lot to say.

At 13 the pain came.

Her mother, Ada, watched as her active daughter became withdrawn and lost in the journey to diagnosis.

“We found out that you have to become your own advocate.”

It took more than two years for her to be diagnosed. Figuring out the right medication also took time. Adapting to this new way of life brought the whole family to their knees.

Some things have to go on — school was one of them.

“At school I was tired of telling my story over and over again to teachers. They didn’t understand. I looked well, but I wasn’t.”

It was tough for her to sit through long classes. It took away her independence at first, including sports. The side effect was depression.

“The mental health aspect was, at times, harder to deal with than the arthritis. But I have moved beyond that now.”

After spending some time at Camp Brigadoon with other young people with arthritis, Taylor had a turning point.

“I knew I wasn’t alone. It was a huge relief.”

She began to get stronger.

“In the past year I have been giving my energy. Sharing what I know.”

She taught a workshop for kids at the Arthritis Society locally and has even shared her story with the National Board.

“I want to make sure that if any other kids or teens are diagnosed, they have support. For any chronic illness, really.”

Her family is learning too.

“As the mother, I am steering the ship, so I had to make sure I was okay too,” says Ada.

This fall, Taylor will be entering university. She wants to be a lawyer, but that could change.

“And if I ever have kids, I would be a master with my kids. I would teach them to live happy lives. And teach them that arthritis is not the end of the world.”

The MacDonald family would like to hear from both parents and kids with chronic illnesses. Any suggestions for support groups, information sharing or ideas on how to make life easier for families and kids.

“It is not the teachers’ fault that they don’t know how to deal with students with chronic illness in the classroom, sometimes. But if I can spread the word and educate, then that is what I am going to do.”

Taylor and her mother can be reached at [email protected] or [email protected].

For information on how to nominate someone for a Community Leadership Award in Dartmouth, email Monique Mullins-Roberts at [email protected].