By Diane Herbst, Practical Pain Management Contributing Writer
Ashley Boynes-Shuck—“Arthritis Ashley” on social media—was diagnosed with juvenile rheumatoid arthritis in middle school and with rheumatoid arthritis (RA) at age 23. She’s never gone into remission.
“I live with some level of pain every day,” says the 33-year-old. “When I am in a flare—and when I am not in a flare—I still live with pain.”
Boynes-Shuck and others with RA know it’s important to communicate effectively with doctors and caregivers for optimal physical and mental health.
Mea McNeil, an RA patient and author of The First Year: Rheumatoid Arthritis, says “It is important to put one’s health front and center and advocate for it. Easily said and so hard to do for a person experiencing pain.”
“A lot of people are afraid to speak up to their doctors,” says Boynes-Shuck. But knowledge is power: “It’s important for patients to feel empowered, and to realize that final decisions are up to them.”
Rheumatologist Don Goldenberg, MD, notes that over the decades he’s practiced, patients “have become much more of their own advocate. Thirty years ago, patients wouldn’t question their doctors—and now we expect it.” Dr. Goldenberg is also an editorial board member of Practical Pain Management.
Before the visit: prepare
Write down concerns and questions to ensure they are covered in the limited time physicians often have.
“Be specific—where it’s hurting, how long it’s been hurting, what type of pain it is. And consider how best to describe this pain,” says Boynes-Shuck. “They want to know if it is burning, it is stabbing, and how long it’s been going on.”
She recommends using apps like MyFitnessPal to track symptoms and triggers like food, weather, stress, and exercise. “You end up with a daily record, which can help you see patterns,” Boynes-Shuck explains.
It’s also important to ask about medication side effects and adverse reactions.
Clarify your doctor’s instructions and advice
“Don’t be intimidated by medical jargon,” says Boynes-Shuck. “If you don’t understand what the doctor is saying you must say, ‘I don’t understand what you are saying—please explain it.’”
“Fundamentally, you need to feel you are in a partnership with the doctor,” says McNeil. “Remember, the doctor is working for the patient and when you are in pain, that is easy to forget.”
If your doctor doesn’t like being asked questions, Dr. Goldenberg advises finding someone else. He encourages patients to bring a family member to appointments to help communicate their needs.
Many patients take notes during the appointment, but consider asking for permission to use your cell phone to record so you don’t miss a thing.
For post-appointment questions, Boynes-Shuck suggests asking the doctor the best way to reach him or her. Nurses and pharmacists can also be good sources of information.
Avoid becoming emotional if possible. “The less emotional you are about it, the more seriously doctors take you, especially if you are female,” says Boynes-Shuck, who has written about gender bias in medicine for The Huffington Post. “There is a huge stigma with pain patients, and women often face the stereotype of being a hysterical patient.”
She adds, “I try to stay calm, cool, and collected, and approach it from a clinical standpoint. I never let doctors intimidate me.”
Be proactive in getting diagnosed
Properly diagnosing RA can be difficult because it’s relatively rare, affecting just 0.5 percent of Americans, says Dr. Goldenberg.
While primary care doctors have come a long way in properly diagnosing the disease, make sure you see a rheumatologist as soon as possible, he adds: “The window of opportunity to make improvement with RA is rather narrow. The earlier we can make a referral, the better.”
Boynes-Shuck admits to being obsessive with medical records. “The best way to be an informed patient is to keep track of your labs and anything else you can get your hands on,” she says. “Over the years, I’ve noticed discrepancies that if I hadn’t seen, could have resulted in the wrong medication or the wrong dose.”
Communicating with caregivers
Boynes-Shuck has been married for six years, and her husband, Mike, sometimes acts as caregiver when she has flare-ups and bad days. She says it’s important to remember that person has needs, too.
“We need to make sure the caregiver doesn’t always feel like a caregiver, and the patient doesn’t always feel like a patient. There’s so much more to a person than their diagnosis and there has to be more to a relationship than the patient-caregiver role,” says Boynes-Shuck.
If Boynes-Shuck is having a bad day, she tells Mike she may need help making dinner, picking up items from a store, or even opening a jar: “I don’t like to ask for help, but when I do, he knows I must really need it.”
It’s also important for patients to show their appreciation and gratitude to caregivers.
“I know marrying someone with chronic health issues has not been easy on him,” says Boynes-Shuck. “But when we married, he knew he took on the role of being both my caregiver and my husband.”
Mike doesn’t seem to mind. “Her support helps encourage me when I feel discouraged. I think we both do that for each other.” He adds Ashley has something he lacks: “While I may be physically strong, my wife has an inner strength that I could never possess.”
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