Cancer Survivor Shares Tips for Living with Chronic Pain

When Rachael Bull was 6 years old, she was diagnosed with a rare type of cancer called rhabdomyosarcoma. The cancer had spread in her abdomen (belly). To treat it, she needed strong chemotherapy and radiation.

Now, Bull is 26. Even though her cancer is gone, she still lives with pain every day. The treatment that helped save her life also caused long-term side effects. It is hard to know how much of the pain came from her treatment, but Bull feels the two are linked. Pain is complex and often a result of many factors. 

Bull has pain in her lower back and joints. She also gets migraines and a type of nerve pain called peripheral neuropathy. These problems make it hard to do everyday things. But Bull has not let pain stop her. She is now working on her PhD in biomedical science in Canada. She wants to become a forensic anthropologist—a scientist who studies bones.

Pain is not always easy to see

Pain can be hard for doctors to measure. It is something you feel on the inside, but others cannot always see. Bull says many doctors did not believe her pain at first. Some told her it was “all in her head.” Others just told her to take Tylenol^® (acetaminophen).

When Bull developed nerve pain, doctors did tests but could not find a cause. That was frustrating. She says, “I’m living with this pain every single day. Pain is different for everyone. Sometimes doctors don’t know what to do if they can’t see a clear reason for the pain.”

Speaking up for yourself

Over the years, Bull learned how to speak up about her health. She says it is important to learn about your own medical history and be ready to ask questions at doctor visits.

“Don’t be afraid to do your research,” she says. “You can say, ‘Here’s what I’m feeling, and here’s what I think might help.’ If your doctor listens and works with you, that’s a good sign. And if not—find someone who will.”

Bull has had to switch doctors before.

“Some people might say I’m a difficult patient,” she says. “But that’s OK. I’m going to fight for the care I need.”

Finding what helps

Pain is different for each person, so pain management approaches will differ too. Bull says she is still figuring out what works best for her.

For her back pain, yoga has helped her stretch and build strength.

“I can walk or stand longer without needing to sit down,” she says.

Migraines are still tough to manage.

“Sometimes I just take Tylenol^® or whatever I need to get through the day,” she says. “The pain can be really intense.”

Now, Bull works with researchers as a patient partner. She shares what it is like to live with pain after cancer, so scientists and doctors can better help others in the future.