When you have a difficult-to-treat chronic illness like rheumatoid arthritis, which has many possible treatment paths and can take years of trial and error to figure out how to manage, you want a rheumatologist who feels like a true partner. The ideal rheumatologist is someone you can ask even the most “embarrassing” questions, someone who trusts your description of your own body, who’s up to speed on the latest research and medications, and cares about your quality of life.
If you’re lucky enough to have a rheumatologist who fits this description, you know how much of a difference it makes in not only the level of care you receive, but in your own peace of mind. Now, if you don’t have that kind of relationship with your rheumatologist, it may be worth exploring the idea of finding a new one. Of course, depending on where you live and how many rheumatologists are located near you, accepting new patients, and take your health insurance, you may have limited options. But there are some clear signs to watch out for that indicate your rheumatologist may not be providing the level of care you deserve.
With the help of our Mighty rheumatoid arthritis community, we created a list of signs to watch out for — “red flags” that you rheumatologist is not the right partner for you. Let us know in the comments if you agree with our picks, and any additional red flags you would add.
Here are seven red flags that indicate it may be time to start looking for a new rheumatologist:
1. When they discourage you from doing your own research.
Some doctors are hesitant when it comes to patients using the internet to learn more about their health. They’re right to an extent — many websites make inaccurate health claims, and it’s all too easy to fall into a black hole of horror stories from other patients that don’t reflect the majority of experiences. But no one should be shamed for wanting to educate themselves on their illness, medication, symptom, surgery, etc. A doctor who’s truly in your corner will want you to be as informed as you possibly can, and if they’re concerned you might find misleading information, they should give you that context beforehand and perhaps give you a few pointers for finding reliable sources online.
If your rheumatologist is threatened by the idea of a patient wanting to learn more about their health, it’s time to find a new physician who welcomes and encourages patients to take control of their own health.
“[A red flag is] when I ask a question about a medication and he tells me to ‘Stay off Google.’” — Rebecca H.
2. When they say or imply that they don’t believe you.
No physician who thinks you’re lying, exaggerating, or unable to describe your own symptoms should have a hand in your illness management. Period. Any good doctor-patient relationship begins with respect — not just from you towards your doctor, but also from your doctor towards you. You may not have a medical degree, but you know your body best, and good doctors know this. Rheumatologists don’t go home with you at night to observe your symptoms, so they need to trust you and take you at your word. If they can’t even do that, it’s hard to imagine how they could possibly help you manage your symptoms.
“When they don’t believe you, basically implying it’s all in your head or you’re faking it, like you don’t know what you’re talking about even though it’s your body. I got that from more than one doctor I guess because I’m younger. I was diagnosed at age 4.” — Shelby W.
3. When they don’t give you accurate information about your health insurance.
Your rheumatologist’s administrative staff should be able to process all your insurance paperwork. What they shouldn’t do is attempt to bypass or manipulate insurance processes and requirements in order to line their own pockets or simplify the amount of work they need to do on their end. And it goes without saying, they especially shouldn’t be trying to “game the system” if it puts your health at risk (as evidenced by the story below). Yes, insurance is a pain to deal with, but that is part of the doctor’s job, and he or she should not make that harder for you than it needs to be.
You also might consider switching rheumatologists if their office consistently makes administrative mistakes and fails to process your paperwork in a timely manner.
“When your insurance will cover a wheelchair that you need and you’re told to look on Craigslist all to avoid the paperwork that the insurance company will require.” — Jennifer L.
4. When they treat you the same as other patients with your diagnosis.
No matter what health condition you have, no two patients are exactly alike, so it’s a red flag if your rheumatologist refuses to deviate from a particular treatment. You may benefit from a different treatment plan and your rheumatologist should be willing to try different methods even if there is one that “usually” works for others.
“When the rheumatologist keeps insisting that every patient has the same systemic reactions to drugs and other treatments!” — Genevieve M.
5. When they judge your health based only on your test results.
For many chronic illnesses including rheumatoid arthritis, lab tests don’t always tell the whole story. People with seronegative RA don’t have the antibodies that the two diagnostic tests look for, but they still have the hallmark symptoms and are treated similarly. Other chronic illnesses don’t have any diagnostic tests at all and frequently result in “normal” lab tests. However, your rheumatologist should not allow tests to be the end-all, be-all of your diagnosis. Negative test results don’t necessarily mean you don’t have a health condition — just that you may have a health condition we don’t have a test for yet. A good rheumatologist will be willing to go on that journey with you.
“When they look at your negative blood tests and tell you there is nothing wrong with you and you are wasting their time! I have seronegative rheumatoid arthritis, and suffered for years without proper medications thanks to that doctor.” — Kimberly M.
6. When they don’t allow you to ask questions.
Asking questions is a necessary part of any doctor appointment, and rheumatologists should welcome the opportunity to clear up any confusion you may have or go into further detail about their recommendations. It’s a major red flag if they seem offended when you ask questions, or refuse to elaborate on aspects of your treatment.
“I asked about biologics and he looked over his glasses at me and said ‘Who’s the doctor here.’ Instantly changed and my new rheumy put me on biologics and haven’t looked back.” — Karen S.
7. When they say, “There’s nothing more I can do.”
When a rheumatologist says this, it generally means they’re out of ideas. But it doesn’t necessarily mean you’re out of options. Take a rheumatologist who says this at face value, and find someone else who has the expertise and patience to continue working with you. You deserve a rheumatologist who won’t give up on you — and they might just frankly be wrong! There are many treatment options for RA and this particular rheumatologist may not be familiar with all of them.
“The moment my first rheumatologist told me there were no other options for treatment after trying and failing just one biologic did not feel right in my heart. Seeking a second opinion changed the course of my care for the better and I am grateful that I didn’t settle believing my first physician.” — Elaine W.
Check out these articles from our Mighty community for more insight on working with doctors as a person with chronic illness:
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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