When it comes to not just surviving, but thriving, with arthritis, there is no relationship more important than the one with your rheumatologist. (What, you thought we were going to say with your family? Okay, okay, they’re really important too. But they don’t have medical degrees…)
And while there are a lot of amazing docs out there doing great work, some may still need a little coaching when it comes to patient care. So we asked people living with all types of arthritis to share their experiences with us about their relationship with their rheums and what they wish doctors would do differently.
Give me a vocab lesson
“When I was first diagnosed with palindromic arthritis, I was really overwhelmed. I tried asking questions at my first appointment, but my rheumatologist kept using all these words I didn’t understand so I ended up feeling like I was totally in the dark about my diagnosis, my treatment, and what I was supposed to do. I mean, who’s even heard of palindromic arthritis before? Not me. I did a lot of googling when I got home and that helped. But I wish my doctor would remember that we’re not MDs and that arthritis is a totally new thing to us. It would have helped me so much if he’d just given me a five-minute lesson in basic arthritis terms.” — Jerry, 54, Dallas, Texas
Don’t rush my appointment
“It may not be *your* first time talking about arthritis, but when you’ve just been diagnosed everything is still really new, which is why it’s so important your rheumatologist takes plenty of time, especially during that first appointment. My doc is actually a great example of this. While helping me with my ankylosing spondylitis, she always takes the time to examine me and talk with me, never making anything feel rushed.” — Christina, 32, Michigan
Tell me to keep a journal before I come in
“At my first appointment, my rheumatologist asked me to report all my pain, swelling, and other symptoms for the past two months and rate them in severity. I knew generally what hurt but not that kind of detail. He told me I should have been keeping a daily journal because my reports would determine what type of medicine to use and how much I needed. I would have kept a journal if I’d known I was supposed to. Hell, I was on the waitlist for four months waiting to get an appointment. Tell your office staff to tell new patients to keep a symptom journal and bring it with them when they first schedule an appointment. Because I hadn’t done this, it took another month of pain before I got meds.” — Jerry
Give me some realistic diet and exercise advice
“Here’s the deal: I’m 60 pounds overweight. I have osteoarthritis in my spine so aerobics is out and candy is easy. I know I need to exercise but even telling me to move more in my daily life can be tricky. I have some days where I can scrub floors and some days where I struggle just to get off the couch. I need realistic advice on what I can do for both types of days.” — Lori, 32, Raleigh, North Carolina
Tell me about my risks for other diseases
“I wish my rheumatologist spoke more about the diseases that having juvenile rheumatoid arthritis puts me at a higher risk for, like cancer and other serious illnesses, instead of just glossing over it. I can’t take precautions to prevent them or look for early symptoms if I’m not aware it could be a problem.” — Brandy, 19, New York City
Don’t sugarcoat the reality of my daily life
“I wish that my doctors weren’t afraid to tell patients how truly hard it is to manage a chronic disease like arthritis — and how much we have to sacrifice. We have to change our diets, our hobbies, our jobs, our schedules, and so many other little things to accommodate our disease. Not saying it may feel easier in the short run but it’s not doing anyone any favors in the long run. Just tell it to me like it is.” — Joey, 29, Los Angeles, California
Don’t just throw meds at me
“I spent over a year going from one arthritis medication to the next. I’d spend six weeks on one, it wouldn’t really work, so my rheumatologist would switch me to another. My appointments consisted entirely of which medication to try next. Then my insurance changed and I had to go to a new doctor. This one gave me a bunch of information about how diet, exercise, sleep, and stress affect inflammation and encouraged me to figure out what was ‘triggering’ my rheumatoid arthritis incidents. I quit gluten and started swimming three times a week and that drastically cut down my pain. I couldn’t believe the first doctor never even mentioned these things to me before. Maybe he assumed I already knew these things but the link between gluten and inflammation was news to me.” — Thomas, 49, Washington, D.C.
Flares can last longer than you might think
Explain that flares can last more than a month, instead of just saying, “It’s only a flare.” Well having a flare ONLY meant I was bedridden for a month and a half and then sunk into a deep depression for another two. Some support would’ve been great. That it was normal, bloodwork, anything, especially because I was not on any med (after three years of knowing I have RA, I’ve yet to find an RX that works). — Sarah Edes Harris, via Facebook
Get educated on the lesser-known types of arthritis
“I have IBD-related arthritis, which is a form of spondyloarthritis. Most regular people have never heard of it, but you’d be surprised how many rheumatologists don’t know about it either. I wish rheumatologists would get educated about spondyloarthritis because it’s incredibly common. Yet it took me two years to get diagnosed and the average time is nine years!” — Allison, 31, Cleveland, Ohio
Tell me how to communicate with you
“I wish my rheumatologist and other doctors would be more clear about what to expect in terms of communication. I have had sudden and extreme variations in my condition and the first time it happened it was immensely stressful to figure out if I should call, send a message, or wait it out for a certain amount of time. I completely understand most rheumatologists are extremely busy but all I need is for the doc to tell me at my first evaluation, ‘If you find yourself not getting a response, here’s what to do.’ It’s just really overwhelming and scary to have your first few flares, feel totally helpless, and then not be able to get help right away.” — Allison
Take the time to explain my treatments to me
“I wish my rheumatologist would explain his reasoning. I have psoriatic arthritis and if I ask him to do something like change my medication or tell him I want a new medication, he’ll often just say no. And then I have to ask him multiple times in a couple different ways before I get the reason. It’s frustrating because it’s my body and I want to have some control over treatment. But if he doesn’t explain then I’m in the dark just trusting him to make the right choice for me. I’ve had a lot of bad doctors, so I want to know what he’s doing and why he’s doing it. I want to be in the driver’s seat.” — Cindy, 29, Columbus, Ohio
Listen to me
“I make it a point to be very actively engaged with all my health care providers, including my rheumatologist. I feel this is very important as we both take an active role together in making a roadmap for my care. It’s important for any patient to have a say in their care but it’s especially true for people with a chronic illness. I’ve had to learn to be my own advocate and it really helps when you see it as a partnership and listen to what I have to say.” — Christina
Don’t judge me
“One thing that’s very important to me is that my rheumatologist needs to not be judgmental. I was diagnosed with juvenile idiopathic arthritis when I was just 18 months old so I’ve been living with it as long as I can remember. Sometimes I do everything right, but sometimes I make mistakes and I need to be able to be honest about all of it to get the proper treatment. My doc now is really great about being non-judgmental so I feel like I can tell her anything.” — Brea, 24, Melbourne, Australia
Remember that your mood affects my mood
“My doc is really lovely but when she’s stressed out during our appointments, I really feel it and it makes things difficult. Sometimes I also feel like she’s cold and distant. I’m not saying we have to be best friends but a little warmth and compassion goes a long way.” — Brea
Have information about disability benefits handy
“I wish that rheumatologists were more helpful and open about getting disability benefits. I have psoriatic arthritis and fibromyalgia and I’m working on trying to access my benefits. It’s just a huge and stressful thing and it would have been great if my doctors had some information or resources to give me.” — Madie, 29, Melbourne, Australia
Inform me about the long-term side effects of my meds
“Another thing I wish rheumatologists would talk more about is the long-term side effects and risks of my medications. They do cover the more obvious side effects but I wish they’d focus on liver and kidney health since those organs are affected by a lot of arthritis medications. Like, what can I do now to prevent damage? What signs should I look for?” — Brandy
Know that biologics are not painkillers
Sure, they can help, but the pain can be unlike anything the rheumatologists ever imagined. — Joan Wzontek Alba, via Facebook
Do a mental-health checkup
“I wish my rheumatologist had understood the impact of chronic pain from my juvenile idiopathic arthritis on my mental health. My first rheumatologist never asked about how I was feeling mentally even though I exhibited lots of classic depressive symptoms. It wasn’t until my new rheumatologist asked about my mental health that I was able to get help for it. This has made a huge difference for me. Honestly, [if my mental health were being treated] my arthritis probably would have been more manageable earlier. What I wish I could tell my first doc? Don’t make people feel responsible for their own pain and at least offer the opportunity to talk about their mental health.” — Mercedes, 17, of Los Angeles, California
Understand that not all of us have a great support system
“My parents aren’t that supportive of me in general and they aren’t any help when it comes to dealing with my osteoarthritis. This can mean I have a problem dealing with the day-to-day things from getting to appointments to just opening a pill bottle. So don’t assume that I’ve got people at home that can help me. Help me figure out ways to do things myself.” — Gideon, 21, British Columbia, Canada
Treatment isn’t sufficient with just biologics and pain medication
I desperately needed holistic advice for how to live my life with chronic pain and my rheumatologist sort of shrugged when I asked her for ideas. It took me years to come across the incredible ADAPT program run by Australia’s Royal North Shore Hospital in Sydney, which brings together psychological, physiotherapy, dietary, and pain specialist management techniques to equip you emotionally, intellectually, and physically with strategies and skills to manage flare-ups and the impact of pain conditions on your entire life.
It seriously changed my ability to cope with my ankylosing spondylitis. I’m working better, more independent, and relying less on analgesics. When I told my rheumatologist about it, she said “I didn’t think something like that would have been useful.” GAH! Arthritis conditions affect so much more than just your body, and even helping your body requires so much more than just biologics and pain killers. — Naomi, via Facebook
