Survivor does not let chronic pain stop her
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Survivor Rachael Bull is working on her PhD in biomedical science.
When Rachael Bull was 6 years old, she was diagnosed with a tumor called rhabdomyosarcoma. Her cancer had spread throughout her abdomen (belly).
Because the cancer had advanced, Bull received radiation to her whole abdomen. Bull, now 26, still has health problems from the radiation and chemotherapy she received. Bull has dealt with chronic pain throughout the 20 years since her treatment.
Today she is working on her PhD in biomedical science at a university in Canada. She wants to be a forensic anthropologist.
She has lower back pain, joint pain, migraines, and peripheral neuropathy, a type of nerve pain. It is a challenge to pursue her studies while dealing with constant pain, but she is determined.
It is hard to know how much of the pain came from her treatment, but Bull feels it is linked. Pain is complex and often a result of many factors.
Bull has struggled to find medical care that helped her symptoms over the years. Many health care providers have told Bull that her pain was “all in her head” or that she was making it up. Others looked for physical causes of the pain. When they could not find anything physically wrong, they told her to take acetaminophen (Tylenol®).
When she developed peripheral neuropathy, doctors ran tests but could not pinpoint a reason.
“They said: ‘Everything’s fine here’,” Bull says. “But I’m living with this pain every single day. Pain is so different for each person, and, in my experience, many clinicians don’t know what to do with that. Pain is never on the top of their list especially if you have other chronic conditions. If nothing shows up on diagnostic imaging or the blood work, then it’s not believed to be super important at the time. That is not fair to the pain experience.”
Bull has learned to speak up about her problems and to not give up until she finds answers. Bull advises other childhood cancer survivors to learn to advocate for themselves.
Advocacy begins with education, she says. Bull has learned details about her past treatment and possible long-term side effects. She actively seeks reliable information about dealing with her pain.
She prepares before each visit with a health care provider. She knows what she wants to say and the questions she wants to ask.
“Do your research, but don't open with: ‘Oh, I Googled this,” Bull says. “It’s kind of like going to court. You have to make your case. Say what you need and why you need it. You might say: ‘Here's what I'm experiencing, and these are the actions I would like to take.’ Have a conversation with your doctor. And if you've got a good doctor, usually they will listen.”
If a health care provider does not take her concerns seriously, Bull looks for someone else.
“I've had some difficult experiences, and I've definitely changed doctors,” Bull says. “I may get a note on my chart that I'm a difficult patient, but I don't care because I will fight for what I need.”
Find pain management methods that work for you
Pain experiences are unique to each person. Bull is still looking for the right mix of things that will work for her.
For lower back pain, doing yoga has built up her core strength. The stretching has been helpful to her joints, Bull says.
“I often feel like I can walk or stand for longer periods without needing to sit,” Bull says.
For migraines, Bull says she has not found the right combination of ways to deal with it. “Sometimes you just have to take your Tylenol or whatever you have to take to be able to function because the blinding pain of migraines is something else,” Bull says.
Bull is currently working with childhood cancer researchers in Canada as a patient partner. The group is studying different chronic pain management tools and patient-provider communication improvements. She shares the patient's perspective on the pain experience.
For more information on pain management, visit managing pain without medicine and complementary therapies on the Together by St. Jude™ online resource.
For more information on chronic pain after cancer treatment, visit the Children’s Oncology Group Survivorship Guidelines.
How to find reliable health information on the internet
More than half - 58.5% - of adults searched the internet for health information in 2022, according to the Centers for Disease Control and Prevention.
But not all infomation is reliable. For tips on how to find trustworthy content, read articles from:
- National Institutes of Health
- Medline Plus