What Would the Car Mechanic Say If You Didn’t Look Sick?
This just doesn’t happen:
You take the car to a mechanic and he looks out the window across the showroom and says, “Your car looks fine to me. The paint is still shiny. It’s not very old.”
All of our cars are pretty old so the guys at the local Firestone shop know us pretty well. Over the past few years, we’ve been in a dozen times for three cars, but never have I been told, “Kelly, don’t let those brake pads worry you.”
No. They listen carefully to the “complaints,” and then look inside, behind, and underneath this-and-that until they find the reason for the problem. They run tests, look in books, and even test-drive my car until they know what to do.
Your hands don’t look too bad
Recently I called a repairman for my refrigerator. Can you even picture him refusing to look for the problem? No.
Imagine if I said, “The fridge won’t make ice,” and he said, “But it’s so clean.”
Imagine me asking, “Why isn’t it cold in there?” and him answering, “Ma’am it looks good and it’s full of groceries – I don’t know what you’re complaining about.”
It just wouldn’t happen.
Unless maybe you were a person with Rheumatoid Disease (PRD) who went to a doctor and he didn’t think your hands looked swollen.
The appliance repairman gets out his thermometer to take the temperature inside my freezer. He takes my claim of “no ice” at face value, and starts to look for the cause. (Side note: why doesn’t the rheumatologist have a thermometer to measure my fevers?)
Think about it. Who would pay the high cost of a repairman if the ice were fine? Who wants to waste half a day waiting? And then have a stranger in her kitchen? Unless there really is an ice problem.
Going to the doctor costs as much time and money. And you bare your private concerns, the pains you endure bravely, and the sudden disability that frightens your loved ones because you’re so strong…
I’ve never met anyone who would go through that for any other reason than to try to get help and relief.
But too often, a patient’s “complaints” are met with comments like “Your hands don’t look bad,” “At least you can still put your arms over your head,” or “You’re too young.” (Or worse.)
Knees are worth more than break pads. And what’s going on in my neck is as important as the belts in my truck.
It feels silly to compare medical care to mechanical care, but this analogy has nagged me for years. It makes me cry when I say it out loud. Who would judge a car’s problems by what it looks like sitting in a parking space? People deserve as much effort and investigation.
Who judges a car’s problems by what it looks like in a parking space? People deserve as much effort & investigation Click To TweetLighting a candle (instead of cursing the darkness)
I realize dismissiveness or inadequate disease treatment is not part of the experience of every PRD. But of the thousands of patients I’ve heard from, it’s a large part. Most of the time, patients try again and eventually find a doctor who treats them appropriately. If a doctor has been dismissive of your symptoms, don’t give up. Yes, it’s frustrating, and sometimes even humiliating to take that chance. But don’t give up. It’s clear that better care is out there.
It’s a watershed time in rheumatology, and experts are aware of it.
1) Studies are showing “substantial numbers of RA patients with active disease did not receive care consistent with the current ACR treatment recommendations. Innovative approaches to improve care are necessary.”[1]
2) The American College of Rheumatology (ACR) has suggested there is “considerable room for improvement in the quality of rheumatic care delivered to the US population and provide a clear call to improve health care for patients with arthritis and allied conditions.”[2]
3) Suboptimal care in Rheumatoid Arthritis has been documented by several studies that suggest “at worst, significant deficits in quality of care for RA exist in the healthcare system, and that at best, more systematic assessment of quality in this condition is warranted.”[3]
3 #rheum studies show it’s a watershed time in rheumatology, and experts are aware of it. Click To TweetWHAT YOU CAN DO
1) If you don’t feel empowered to find good care, read good books like The Empowered Patient by Elizabeth Cohen or e-Patient Dave deBronkart’s new book Let Patients Help! A patient engagement handbook and others we’ll be previewing here on RAW in the coming weeks.
2) Find a friend or family member to partner with and encourage each other to get the level of care you need.
3) If you have a fantastic doctor for RD, please consider sharing the name on the comments page. You don’t need to use your own name if you don’t want to.
Note: “complaint” in the context of diagnosis means condition, illness, or disorder; not criticism.
Postblog: The movement to improve care isn’t anti-doctor; doctors have co-led the movement. Examples:
- The e-Patient White Paper that kicked off a movement, written by a doctor, Tom Ferguson
- The blog and videos of Dr. Mike Sevilla who was a social media pioneer as Dr. Anonymous
- Fellow members of the Society for Participatory Medicine Dr. Danny Sands and Dr. Rob
- Dr. Leana Wen’s new book When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests
- And there are many, many more.
Recommended reading
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
- A Doctor-Patient Covenant: Medicine’s Future Found In Its Past
- Trust and Transparency with Disease Activity, Decisions, and Doctors
- The Path of Mercy in Medicine: A Tale of Two Doctors
- Rheumatoid Arthritis Doctors’ Interviews (Doc space heater)
FOOTNOTES
[1] Harrold LR, Harrington JT, Curtis JR, Furst DE, Bentley MJ, Shan Y, Reed G, Kremer J, Greenberg JD. Prescribing practices in a US cohort of rheumatoid arthritis patients before and after publication of the American College of Rheumatology treatment recommendations. Arthritis Rheum. 2012 Mar [cited 2013 Aug 2];64(3):630–638. Available from: http://onlinelibrary.wiley.com/doi/10.1002/art.33380/full
[2] Saag KG, Yazdany J, Alexander C, Caplan L, Coblyn J, Desai SP, Harrington T Jr, Liu J, McNiff K, Newman E, et al. Defining quality of care in rheumatology: The American College of Rheumatology white paper on quality measurement. Arthrit Car Res [Internet]. 2011 Jan [cited 2013 Aug 21];63(1):2-9. Available from: http://onlinelibrary.wiley.com/doi/10.1002/acr.20369/full
[3] Yazdany J, MacLean CH. Quality of care in the rheumatic diseases: current status and future directions. Curr Opin Rheumatol. 2008 Mar [cited 2013 Aug 21];20(2):159-66
I have a FANTASTIC Dr,
Dr. Sonia Yousuf MD, is a rheumatologist at Allegiance Rheumatlogy in Jackson, Mi.
Thanks so much for sharing Bill. This is a big part of the solution.
Kel,
You know I waited far too long to find a new doctor! I hope others will read this blog post and not delay any more if their current doctor isn’t a good fit. It will make a huge difference.
I hope so too Tracy. Be both know how hard it is.
Dr Jill Zouzoulas Mecklenburg Medical Group at Southpark in Charlotte NC. She and her nurse are amazing. My joints aren’t happy when I leave because she feels every one but she knows what is happening with my synovium and she listens and takes me seriously. She believes in being as aggressive as I’m comfortable with.
thanks Andrea. I had the same experience with Dr. Smart, who examined some of my joints, looked at both sides, and had obviously been trained to do so. I didn’t care if it hurt because being taken “seriously” as you said is so important.
I love the car mechanic analogy! Unfortunately, the reverse analogy would be me. I’m the one with the shiny car the mechanic WANTS to do preventative maintenance on and I’m the one who says “if it ain’t totally broke, why fix it?” Bad decision for a vehicle, and a PRD. I’m one of the fortunate ones and have a great team of physician’s here in Brandon, FL. I was encouraged to begin DMARD’s early in my diagnosis of seronegative RA, and I did. But, they all made me feel worse than the tenderness and stiffness I was experiencing, so I quit. Now, 2 years later, I regret not doing that ‘preventative maintenance’ as was strongly suggested. Now, not only am I miserable, but will begin even more powerful drugs. So, that was me, I looked fine, but my ‘mechanics’ believed I wasn’t….and they were right.
I recently switched dr’s and FINALLY feel like I have one that is listening to me! Dr. Sharon Katz, and her team of NP’s at Lahey Clinic in Burlington, MA. I just recently linked this post on my personal blog because you write as if I were speaking myself! Love your blog, and all the good info you share. Thanks so much for making me feel like someone can relate to exactly how I am feeling!
Thanks Maribeth. I’m glad we can strengthen each other to be as well as possible. Good luck with that mtx injection.
Kelly, thanks again for your post that, 1) recognizes the problem in rheumatology care, and 2) provides concrete suggestions for us to improve our medical treatment.
There is no point in simply complaining to one another about the problems with rheumatology care. Once we see it, WE are responsible to help improve the situation. Your post provides ideas for us to address the situation.
I might add that continuing to educate ourselves on all aspects of rheumatoid disease is one way to be prepared to offer suggestions to doctors to obtain the care we need.
One of the difficulties is during the times our symptoms are so severe we cannot even think straight to advocate for ourselves. It is hard for family members to be as familiar as we are on what “should” be happening, particularly in the ER. It is challenging for those who are on their own as well.
After a long search, I found a rheumy that treats me with such kindness and care. He listens like every doctor should and treats my concerns and opinions with great respect. I adore him. He’s Ming Chen, MD at Amarillo Diagnostic Clinic in Amarillo TX. I can’t say enough kind things about him.
Excellent post Kelly!
I’ve found the doctors at Arthritis and Rheumatism Center
to be pretty aggressive about treatment and responsive to patient’s needs. I see Dr.Silcox. It is a large practice with several doctors and they do infusion on site. If you live in the San Jose, CA area give them a call.
700 W Parr Ave Suite A
Los Gatos, CA 95032
(408) 866-1135
I am lucky enough to have a wonderful and caring rheumatoid arthritis doctor. His name is Dr. James Jakes in Montgomery, AL. I moved from Memphis, TN and my doctor there looked him up and recommended him to me. He is extremely dedicated to giving his patients the best care he possibly can. I have been seeing him for about 15 years and certainly hope he doesn’t retire any time soon.
13 years ago, my labwork at Primary MD came back with elevated Rheumatoid Factor levels and elevated sedrate with redness and swelling in my hands and pain in my joints. I went to my first Rheumatologist 6 weeks later. In the meantime, I began juicing carrot/apple juice daily, eliminated sugar and yeast from diet. At my 1st Rheumatologist visit, my labwork came back within normal limits, though I continued with joint pain (MD suspected viral polyarthritis and said he believed my joint pain would improve over next year). Since then, I have continued with joint pain and intermittant elevated levels of RF. My last visit to Rheumatologist was 5 years ago….even though my RF levels were elevated and I continued with joint pain, he felt that I had no visible joint destruction and therefore at the most, I had a mild Rheumatoid Arthritis….so no treatment. Over the last 2 years, I have developed some peripheral neuropathy and cysts on joints of my fingers with increasing pain. My current Primary physician recommended just anti inflammatory, Celebrex (which I did not take…just taking Omega 3’s for natural anti inflammatory). However, this past year, I went on a gluten free diet because my daughter wanted to try it so see if it would help her lose weight. After 30 days, I attempted to add back in gluten and had cramping and bloating and diarrhea. I went to Gastroenterologist who performed upper scope that revealed inflammation in GI tract and prescribed Prilosec. She suspected Celiac or gluten intolerance/sensitivity, but scope with biopsy was inconclusive because I had not been on gluten for previous 30 days. Please understand that I previously had no GI symptoms that I would have connected to gluten intolerance. Since I returned to gluten free diet and have been taking Prilosec along with some anti inflammatory digestive treatment (Lemon/Peppermint therapeutic essential oils), my peripheral neuropathy and joint pain is disappearing. So, apparently gluten intolerance/sensitivity/celiac are autoimmune reaction….I write this because I would not have associated my nerve and joint symptoms as being related….so please research this as possible underlying condition contributing to symptoms of RA.
Right on the money, as always–thank you for writing this. Really, your blog should be required reading for all practicing rheumatologists!
Kelly, you’re just a masterful textbook example of the engaged, empowered patient at every level of care. It’s an honor to know you and even more of an honor to have you speak well of that little book.
I really want feedback on how to improve it for a next edition. Since I self-published, that’s cheap and easy for me to do, and I’d love to make it better for RD patients.
lol. I was going to text you to say I got a Kindle edition but was waiting for my signed copy still. I’m planning a review so hopefully we’ll get you some feedback then.
Kelly,
I bet if cars came in both genders, the mechanics would look at the girl cars and say, “looks fine to me, although it could stand to lose some weight.” They would also probably tell the owner that girl cars are inexplicably emotional, and that perhaps the car has some anxiety and/or depression.
😀
Unfortunately women are usually looked at as crazy when the mechanics, repair men can’t immediately find the problem also. Or talked down to! I just want to shout that I am NOT a hysterical women!
I also have a fantastic doctor! Dr. Stanford Peng at Virginia Mason in Seattle, WA. He always listens and works with you.
I guess you’ve had better luck with mechanics than I have! My fourth finally looked under the hood and said, “Lady, see that right there? That’s a broken motor mount,” after the first three had either denied there was a problem or tried to sell me new shocks for a new car. My third rheumy seems to recognize the broken motor mount right away. Hallelujah!
Then there was the dealer who tried to sell me an air cleaner that was totally the wrong size and shape. I finally went out, pulled the old one out of the car and told him to just give me one of these, I don’t care if you think it’s the right one for my make & model. That might be the guy who said my only problem was a little osteo in the only joints in my hands that DON’T hurt.
There was the guy that put the wrong oil filter in, mistaking a Saturn for a Subaru, almost costing me an engine. Thankfully, I haven’t run into his doctor equivalent yet.
We know our cars, we know our bodies. I’m a good judge of when something is really wrong with my car or myself. Both doctors and mechanics are too often dismissive of the concerns of middle-aged and older women, though. My current mechanics are right across the street from where I work, and they’re a bunch of princes. My new rheumy, as far as I can tell after one visit, seems to be a keeper, too. The more we know about our cars and about our diagnoses, the more power we have to create the partnerships we need with our mechanics and our MDs.
“…my only problem was a little osteo in the only joints in my hands that DON’T hurt.”
Hey! That’s what Dr Rotten (my first rheumy who I fired) told me — I had osteo in my thumb joints, and they’re the only joints that DON’T hurt!!
I have an appt in Oct with a different one… I wonder what she’s going to tell me. Will she look under the hood and poke and pry and get her hands dirty? Or will she say the paint’s still shiny and those tires don’t LOOK overinflated?
We shall see…
Great article, as always. I’m pretty new to the site (and RA) and you’ve been a great source of information.
My wonderful rheumatologist is Dr. Derek Peacock of Columbia Rheumatology in Kennewick, WA. He and his staff are patient, knowledgeable, and kind.
thanks Carole. I’m glad you’re getting good care!
Kelly, wonderful article, love the analogy.
Your post made me remember something. When I worked in a cardiology practice, the examining rooms were at the end of a long hallway. The was so much info to be obtained from watching patients walk down the hallway – were they walking at a normal pace, having any trouble breathing, limping or unsteady on their feet, smiling or appearing in pain….
Most of my doctors don’t see me walk, often just see me sitting on an examining table, where they can decide that my hands look fine. Fortunately, my wonderful rheumatologist listens closely and believes everything I say so I don’t feel I have to prove anything. But seeing me at rest is dramatically different from seeing me walk ( at least on some days).
Love this post! My rheumy is pretty good. There are only 3 rheumys in my 60,000 populated town and I had to wait 6 months to even get an appointment with any of them. I do like Dr. Jeremy Schue at UAP Bone & Joint Clinic, Terre Haute, IN. Although he is often rushed, he does take time to listen and feel all my joints at each visit. I’m not sure any rheumy can take all the time they would like or even begin to understand the toll that pain can have on a body and soul, or the effects these meds have on the body and soul. But overall I have recommended him to several others with various auto-immune issues and they seem pleased too so I guess that’s a pretty good recommendation.
Can anyone recommend a rheumatologist in or near Stuart, Florida? I have an 80+ family member with fibromyalgia along with lots of other painful ailments who is not receiving help from her rheumatologist and I’d like to pass along a recommendation for her. Thanks!
Great article Kelly, I am one of the lucky ones. I have a fantastic rheumatologist Elena Barnes in Melbourne Florida. I have to drive about 40 miles to see her but it is well worth the drive. She treats the whole person, not just the parts with RD. She has helped me to make a lift that is worth living.
life, not lift
Dr. Richard Haddad, Allegra arthritis associates, red bank and hazlet, nj. I have never had another ra doctor but he now also treats my hubby and 84 year old father. Love him!
I go to Allegra & Associates as well! But I see Dr Allegra, and was recently thinking about seeing Haddad instead for my next appointment just to see if he does/says/notices/recommends anything different.
Dr Monika Mohan, Lansing, MI is fantastic!
I am a RN. I love the efficient way this office is run, it is like a caring and well oiled machine. I never wait more than 10 minute for my appointment.
My temperature is taken, my joints are examined, swelling is noted, my concerns are of utmost importance, my questions are always answered.. My complaints are heard and all efforts have been made to help me maintain mobility.
I was diagnosed in March, my MTX dosing has been increased per protocols and I will hopefully be enrolled in the drug study that I am most interested in in the very near future.
Thank you. That is exactly what I have heard. Pushing on my hands and making me wince then telling me they “don’t look bad ” “We are doing pretty good”. Like there is a “We” The support and information on this site have been helpful.
Another great article by Kelly Young. I so admire your ability to present information in an interesting and informative manner. I too had my first Rheumy tell me to come back when my hands started to show something. I have been very lucky and the 2nd Rheumy looked at my test numbers, gave me a great exam and listened to what I had to say about fevers etc. She said we needed to be aggressive and for me to be aware that we are in for a long ride together. I know I would be so much worse right now If I had not gone to her. Her name is DR. SHARON NUNEZ in Albuquerque New Mexico.
For anyone reading from Australia, I have a wonderful rheumatologist who continues to give prompt, fantastic care and to listen even though my car sometimes looks shiny and the fridge is clean. Dr Anthony Boers: worth his weight in gold! If only I could say the same of friends and family…’I wished I looked as young as you do’ and ‘yes, nan (aunty, friend) has a bit of arthritis too, but they don’t let it slow them down nor do they believe in popping pills…’Lord almighty, don’t we all fight an amazing war for support, respect and help.
My rheumy is just like a mechanic. She is always telling me how she is surprised I don’t complain more about wrists and feet, that she thinks they are worse than I tell her.
Dr. Callis and her and her entire staff at Salem Rheumatology in Eugene Oregon are a god send. I have been battling doctors for over 20 years, since I was 16. She is the first to want to treat me, not medicate me.
Dr. Niti Thakur in East Lansing, MI is wonderful. She’s been my rheumy for nearly 15 years and has always listened to my concerns. She and her staff take time to listen to patients, keep up on latest RA research and really care. They were all very helpful when I needed paperwork for Social Security Disability and Long Term Disability and promised to do whatever they could to help me. She’s my 4th rheumy since my JRA flared 30 years ago, and I would highly recommend her.
Im very thankful that i have an excellent rheumy doc… When i first went to him he was suprised that i “was so young” i was 25 when i went to him the first time. That didnt stop him from listening to me… When im on my meds he sees that it helps and encourges me. I didnt have to beg him too hard to get my knee surgery done . I just told him my story and how i wanted to spend my time with my daughter… I have great menchanic…
Dallas, TX – Dr Catalina Orozco. She is amazing!
Does anyone have a great Rheumy in or near the NW suburbs of Chicago? Think I need a change after reading all these comments.
My current rheumy is great: Dr. Paul Dellaripa at Brigham & Women’s Hospital in Boston, MA.
My excellent hand surgeon: Dr. N. Kasparyan at Lahey Clinic in Burlington, MA. Great surgeon with awesome bedside manner.
Excellent orthopedic surgeon who will probably be doing my ankle replacements: Dr. Mark Slovenkai, Boston Sports and Shoulder clinic in Waltham, MA (also works out of New England Baptist hospital).
I am so glad so many have such wonderful rheumies. I just went to my last one two months ago and don’t intend to go back. I spoke with my GP about how I felt. The doctors now are forced to key into their laptops everything that is going on in our appointments, therefore, we feel like they are not listening to us. It is not entirely their fault, they are being forced to have their notes done within 24 hours, and they have to see x amount of patients a day. My GP only does it a little when I am in with her. She said she is suppose to be doing it (typing notes) more, but she wants to hear her patients. But because she is not getting her notes done, she has to stay late. Sometimes she said she doesn’t get home until 7 or so. She has three kids under 7. So I told her I understood and that it wasn’t fair to anybody. But, I love that she does it. I told her if it was all the same to her, I am not see any more rheumies and just going to see her. She smiled. I feel like the whole system is broken. There are good docs out there, they are just being made to do things that aren’t beneficial to the patient. Things that are “cost effective” but not patient friendly. Not sure what the answer is though.
Saw this excellent post via our mutual friend – Mike Sevilla. If you are interested, would be happy to send you a copy of my book – The Thrifty Patient – Vital Insider Tips for Saving Money and Staying Healthy – for your thoughts and feedback. Dr. Leana Wen feels it is worth the read as well.
http://www.amazon.com/gp/aw/d/0979351227/ref=mw_dp_mdsc?dsc=1
Thanks Davis. My email is kelly @ rawarrior.com
Does anyone know of good rheumatologist at the Mayo Clinic in Rochester, Minnesota?
I know some of them and they are very good people. I have not been there as a patient, but I know others who have.
I had a wonderful rheumatologist when in Michigan, he is Lawrence Silverman and his office is in Southfield, MI.
Not such good luck yet in the central Florida region, but keeping my eyes/ears open.
I had an appointment with my (now former) rheumatologist last week and I’ve been crying ever since. She yelled at me for no reason that I know of, treated me rudely, then raised my Orencia and overdosed me. I could actually smell the Orencia coming out of my pores! I’ve been terribly ill and upset.
I’m being transferred to the care of the head of the clinic. He called me after the infusion nurse told him what had happened to me and he sounds like a real human being, which is a good place to start, IMO.
Good for that nurse! Hope your getting better care now!
My first rheumatologist was okay. She diagnosed me with RA and treated me with methotrexate, then plaquenil, then methotrexate. However, she was very rude and obnoxious. After resiging from my job because it was making the RA worst, I had to sign up for the state medical program and those doctors are the worst. He did not examine me physically and said I looked fine. My fingers were not swollen so I didn’t have RA and he regused to prescribe methotrexate again. So I have been untreated since January this year. The ER physicians have found RA but the state doctors refuse to examine me. I tried to find another rheumatologist but there aren’t any in a 100 mile radius that accepts the state insurance that’s not affiliated with the horrible LSU rheumatologist. So I’m in a ton of pain with a ton of bills and I don’t see a way of paying or treating any of them.
I love, love, love my rheumatologist. From the first time I met him when he shook my hand with the least amount of pressure possible, to my most recent visit when he told me how proud he is of me for fighting so hard and well against this disease. He even called me his “Star” patient.
Dr. Mohammed Mughni (pronounced Mug-Knee)
Brooksville, Florida.
I’m 32 and I have RA, fibromyalgia, and diffuse connective tissue disorder my rheumatologist treats me like a number I’m happy but sad at the same time to hear this happens to others. It’s not fair I was wondering if any one knew of a good rheumy in Pittsburgh Pa I’m suffering in a lot of pain and being ignored because I’m so young. I just want someone to please help.
I LOVE my Rheumy! I am sero-negative and have a host of the “odd” symptoms. She has never once doubted me or talked down to me. She believes everything I tell her and even wants to see my pictures. She also asks me to come in every time I’m having a flare so it can be noted on my medical record. It took me close to 3 years to find her, and a whole slew of a**hole doctors. To everyone still looking, keep your spirits up and keep fighting the good fight. There are good docs out there! Always trust your instincts.
Dr. J. Rayadurg. Westhealth/Allina Plymouth Mn
yes it was hard to find a dr to get dx and treatment. In fact it took my current dr a few visits to get me off inappropriate meds and see/hear what was going with me before slowly adding new meds. I found being specific about funtional limitations was the key to being heard.
Now the keys to my wellness are following my injection schedule, regular gentle exercise, regular use of essential oils and supplements, regular massage, as well as Reiki for emotional support. Being a whole “well” person takes a lot of work! Don’t give up looking for solutions!
Thanks for all you are doing ,I would like to say as a man who still has to force myself to go to work everyday,I feel my Doc is very complacent,treating only the inflammation abd pain albeit that helps , I get the you dont look sick daily because I refuse to seek the sympathy etc.. I own my own machine shop so I HAVE to work ….its not stopping me,I am stronger than this disease ( for now) …