Living with RA? How to Be a Better Communicator with Your Doctors and Caregivers

When you're a chronic pain patient, it's very important to communicate your needs clearly to your healthcare team. Here are tips and advice from two rheumatoid arthritis (RA) patients and a renowned rheumatologist to help you get the pain relief you seek.

arthritis ashley and her husband mike"Don't be intimidated by medical jargon," says Ashley Boynes-Shuck. "If you don't understand what the doctor is trying to convey you must say, 'I don't understand what you're saying—please explain it to me'."Ashley Boynes-Shuck, better known as "Arthritis Ashley” on her plethora of social media sites,1,2,3 was diagnosed with juvenile rheumatoid arthritis in middle school and later, at the age of 23, with rheumatoid arthritis (RA). She’s never gone into remission.

"I live with some level of pain every day," says the 33-year-old Boynes-Shuck, of Pittsburgh, PA. "Like many who share my condition, some days are worse than others. When I am in a flare, and when I am not in a flare I still live with pain."

Ashley and others suffering from RA, a disease characterized by inflammation of the joints,4 know just how important it is to communicate effectively with one's doctor—as well as one's caregiver—for improved physical as well as mental health.

Says Mea McNeil, an RA patient and author of the book "The First Year: Rheumatoid Arthritis": 5 "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."

Here are tips from these two RA patients—and a renowned rheumatologist—to help you get what you need from your doctor and/or caregiver by communicating clearly about your health.

Speak up

"One of the things I've noticed is that a lot of people are afraid to speak up to their doctors, to bring up questions and voice concerns," says Ashley.

But knowledge is power. "You have to know what you are dealing with," she says.  "It's important for patients to feel empowered, and to realize that final decisions are up to them."

Rheumatologist Don Goldenberg, MD,6 notes that over the decades he's practiced, patients "have become much more of their own advocate," he says. "Thirty years ago patients wouldn't question their doctors and now we expect it."

Prepare for the visit 

Write down any concerns and questions, for clarity and to ensure that your issues 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; consider how best to describe this pain," says Ashley. "They want to know if it is burning, is it stabbing, how long it’s been going on.”

The social media darling (Arthritis Ashley Facebook page has over 6,500 followers and 8,800 people follow her on twitter @arthritisashley) recommends using apps such as My Fitness Pal to keep track of symptoms and triggers like food, weather, stres, and exercise. “Apps make it easy to record your observations and you end up with a daily record which can help you to see patterns,” she explains.

It’s also important to talk to the doctor about medication side effects and adverse reactions. “Too many patients are afraid to challenge their doctors about unpleasant side effects they may be experiencing but your experience may be unique

Clarify your doctor's instructions 

"If they are not communicating with you in a way you understand you need to voice your concerns and speak up," says Ashley.  "Don't be intimidated by medical jargon. If you don't understand what the doctor is saying you must say, 'I don't understand what you are saying, please explain it.’"

Ashley has met people who are afraid to tell their doctor that they want to get off of a medication, or seek a second opinion.

"Fundamentally you need to feel you are in a partnership with the doctor," says Mea. "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 his patients to bring a family member to appointments to help patients communicate their needs. "I think open dialogue is very important,' he says.

Of course, many patients take notes during the appointment but if you find that to be a distraction—or if your doctor is a fast talker and it’s too challenging to keep up—consider asking the physician for permission to record the appointment. Many cell phones come with a voice memo feature that makes it easy to do.

Following the appointment, you may find you have additional questions that you neglected to ask or that didn’t come up at the time. Ashley suggests asking the doctor the best way to reach him. Some doctors have website where a patient can reach out via email; some doctors respond to text messages, too. Don’t forget that the office nurses and many pharmacists can also be good sources of information.

Remain calm

It’s important to avoid becoming emotional. Information is better received when facts are calmly stated, says Ashley.

"I think sometimes the less emotional you are about it, the more seriously doctors take you, especially if you are female," says Ashley, who has written about this gender bias in medicine for The Huffington Post7. "There is a huge stigma with pain patients and women often face the stereotype of being a hysterical patient."

Ashley is "careful not to get too worked up, even if I am about to burst into tears," she says. "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 due to its relative rarity, afflicting just 0.5 percent of Americans, says Dr. Goldenberg, noting that the vast majority of people who have aches and pains who are worried about RA don't have it.

Ashley admits to being absolutely obsessive when it comes to her 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. Doctors aren’t perfect. They can miss stuff.”

And while primary care doctors have come a long way in properly diagnosing the disease, make sure you see a rheumatologist as soon as possible, says Dr. Goldenberg.  

"The window of opportunity to make improvement with RA is rather narrow," the rheumatologist admits, "so the earlier we can make a referral the better. Patients should be aware of that."

Communicating with a caregiver

Ashley has been married for six years, and her husband, Mike, sometimes acts as a caregiver when she has flare ups and bad days.  Prior to that it was her parents. Sometimes, she says, as a patient, it’s easy to get caught up with medications, pain and doctors' visits—and it's important to remember there's another person involved.

ashley and husband with dogsAshley has been married to her husband Mike for six years. "It's important to remember that your caregiver has needs too."“We need to make sure that 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 Ashley describing the mutual respect she has with her spouse.

"My husband needs to see me as his wife, not just some sick person he lives with and has to deal with," she says. "And at the same time, I need to realize he takes on additional burdens because of me and because of my health situation."

If Ashley is having a bad day, she informs her husband ahead of time that she may need his help making dinner, picking up items from a store or even opening a jar.

"I have made it clear I don't like to ask for help," she says, "but when I do he knows I must really need it. I communicate how frustrating it is but is but I still need assistance."

Ashley realizes that many RA patients won't ask for help "because they are embarrassed or feel like a burden," she says.

At the same time, it's important for patients, especially if a caregiver is a family member or spouse, to show their appreciation and gratitude. "It's is so crucial," she says.

"I know marrying someone with chronic health issues has not been easy on him," says Ashley, noting her husband, Mike, a teacher, is so fit he's a competitor on TV's American Ninja warrior."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. “I see my wife wishing she could even run a 5K or exercise daily like I do but—through no fault of her own—she can’t always work out. Her support helps encourage me when I feel discouraged. I think we both do that for each other.”

Apart from that, Mike says Ashley has something he lacks: “While I may be physically strong, my wife has an inner strength that I could never possess.”

Dig more into the conversation around living with rheumatoid arthritis.


Updated on: 10/03/19
Continue Reading:
5 Tips for Coping with RA Flare-ups