Professional Perspective

Being a newcomer to rheumatologic illness does not mean I am inexperienced. In my professional life, I am a primary care physician, board-certified in internal medicine, and working on becoming board-certified in obesity medicine. This was all I ever wanted to do. From the time I was 3 years old, I would pretend my stuffed animals were ill, and after examining them with a toy stethoscope while wearing sunglasses with their plastic lenses removed (to appear intelligent), I could be overheard diagnosing them with ear infections or pneumonia, telling them they needed antibiotics to get well. No doubt this was something I had heard in exam rooms myself, as a child with allergies and recurrent ear infections that would sometimes develop into bronchitis or even- you guessed it- pneumonia.

Very precocious and opinionated at an early age, it was sometime later in my imaginary career, perhaps when I was 4 or 5, I posed, hand on hip, and told my mom I worked in a weight-loss clinic. Maybe this was from a commercial or something I had heard on television, but I hope she did not take it personally. When I was a teenager, I took an evening medical terminology course at the vo-tech school with adults who gave me funny looks, and often I could be heard asking my friends details and/or offering advice about their cold symptoms or other physical ailments.

These early experiences shaped the kind of physician I would one day become, one who has been a patient many times, with diagnoses ranging from allergies to thyroid cancer, and having had 14 surgeries for various and sundry conditions, most recently to repair a torn ACL from a skiing accident. On the one hand, I know that I have had pretty good health despite everything, and on the other, my brushes with being a patient have made me a better doctor. My patients appreciate that I have both compassion and empathy, though they may not always realize these are, in part, born from the perspective of being on the other side of the exam room.

So when I developed arthritis last fall, I felt rather more prepared than I knew many patients were, knowing that today there are more therapies available than ever before, and that we now have the ability to replace joints in fingers, fuse wrists that have deteriorated, and to wear ring splints to stave off deformities of the fingers commonly seen in RA.

Ironically, during medical school, I had completed a summer rheumatology preceptorship (an area of more in-depth study working directly under an expert in the field), and I had the opportunity to learn about living with the disease directly from the patient-instructors who volunteered to help us learn how to complete a thorough yet gentle exam on someone with RA. I was certain I knew exactly what to expect, so much so, I saw it as both a blessing and a curse, because I knew exactly what to expect(!) and how this would affect my functional ability. What I did not bargain for were the social and emotional consequences of staring down the gullet of a beastly systemic disease that has the ability to render strong individuals weak and disrupt everything in its wake.

Most people have busy, complex lives, multiple roles they play within them, people to care for and whom rely on them, social structures of which they are a part, personal interests outside of their vocations. As most of us are endowed with fairly good health, we navigate life’s complexity without much trouble. My life is no different, other than as a healthcare provider, I have more people who rely on me being functional than does the average person. Until RA, I took for granted how easily I could complete my various activities. Some of the ways I began to struggle–

** at work: caring for patients with ongoing compassion and empathy although I did not feel well, in addition to all that a medical practice entails– approving refills, taking calls during the day and after hours, completing documentation, supervising my staff and instructing students– as well as serving on committees out of a sense of duty and support for my organization and in keeping with my interests;
** at home: as the “head” of domestic duties, including laundry, shopping, cooking, and in having the energy and endurance to care for my 3 children, my husband, and our dog who would shortly thereafter develop a recurrence of lymphoma and require increased care before ultimately succumbing;
** at leisure: playing piano as an emotional outlet and for my church, reading as an escape and as part of my book club, maintaining a social life with mothers in the neighborhood for sisterhood and my own sanity!

What I did not anticipate was going through all the stages of grief over this disease, at first being in denial that I needed to slow down, anger- which was fleeting, because no one was to blame, bargaining with myself that I could hold on if I just made a few slight accommodations, depression- an ongoing struggle but better, then mourning my “old life” when I finally accepted I couldn’t do it all at the same pace and also get the rest I needed to fight the extreme fatigue I had no words for other than the feeling that each of my limbs weighed 50 lbs. It’s a work-in-progress, since the disease is not yet controlled, it’s still crashing through my life, and I am still picking up the broken bits and coping with it on every level.

I would add that I was never one to second-guess my own decisions, as each led me to a place that only served to further my growth and push me closer to my dreams and desires, and I’d only ever been confidently decisive. But the self-doubt that has planted a seed, the thinking that perhaps this is all in my head as most of my labs are normal (thus leading to diagnosis of seronegative RA), my exam minimally impressive for synovitis when I have seen my rheumatologist, and even imaging failed to show signs of RA, has made me wonder if I will ever get to that treatment sweet-spot, when my disease is controlled, I can resume an active life, and say with confidence that I know what I’m about again. When you know, you just know.

Perhaps the technology is less advanced than my diagnostic acumen attuned to my own body, a powerful clinical target for my brainwaves to be trained onto. However, by history and presentation the rheumatologist believes something is there, so if I have to keep undergoing tests until it can be “proven” in order to justify stepping up my therapy, that is what I will do.

Jennifer Scheid, MD

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (10)
  • SueH
    3 years ago

    Hi Jenny,
    I realize this is an old post I’m stumbling across, so not sure you will actually see this. I want to thank you for giving the health care provider perspective as well as talking about the grief process. I was diagnosed 6 weeks ago (after 3 months of pain, negative tests and a PCP that thought nothing was wrong with me) with seronegative RA and thankful I found a great rheumatologist who started me on prednisone at the first visit and DMARDs (Ridaura) when we saw no joint damage. I’m stuck in the grief process between the denial, anger and depression. Being a mom and RN, I am struggling with having to slow down my routine and fear being seen as that “annoying/whiny patient” with a million questions. I’ve always known my body so well, now I feel like a complete stranger to myself. I’ve got fears that I my career of 26 years may have to change because I don’t know if my body can meet the demands of my job anymore. My children ask me if I’ll still be able to hike, bike, kayak, etc with them (valid questions since some days I can barely walk up the stairs).
    Now that you are 2.5 years diagnosed, can you give a perspective on work/life/RA balance? Any advise on how to get myself through this grief process?

    Thanks,
    Sue

  • vicki b
    5 years ago

    Hi jenny- I am an RN living with the Dx of Seroneg also. Plaquenil stopped working, MTX didn’t help, have had prednisone bursts which help temporarily and numerous NSAID use which has led to Prilosec use. My labs show nothing-did once have elevated crp and sed rate. I feel like I have been “blown off” at times because of neg labs. Now however I have had to have several MrI’s and all show a combo of tears and fraying of cartiledge and tendons, synovitis in knee and wrist, partial thickness tear of common hamstring and right knee so bad I don’t think it’s fixable. Shoulder, hip, wrist, knee are all involved- one side only at this point but I think something is mildly happening in the other same joints. I feel some of my tx has been slow and not aggressive enough and now I’m losing joints. And of course poor pain control because of the abusers and new regulations for pain meds. So…as a patient be strong and advocate for yourself with the MD. It seems when I’ve tried I’m viewed as a whiner and I think it comes from the MD not seeing black and white info on labs. And this is from the rheumatologist !! I think the films may change things. I see her tomorrow. I have found in this 10 yr journey that being passive as a patient is not good. I am a good strong nurse for my patients but not so strong for myself. Take action for yourself and don’t feel invalidated because “not much is showing yet”. That was me and now I may lose joints, job, and mobility and have not tested positive yet!! Strength and blessings to you!!

  • Jenny author
    5 years ago

    Wow- I’m shaking my head and feeling horrible that you were blown off. I treat lots of pain patients myself, which not all primary care docs will do anymore, but thankfully I was already comfortable doing so and considered each patient an individual. Now, I understand it even more and am that much more compassionate about their very subjective pain experience. How many people suffer because of these DEA & FDA crackdowns, media campaigns, or anecdotal stories they have heard about becoming addicted to pain meds?

    Back when I began this arthritis journey, about 11 mo ago, I wasn’t even thinking RA, but as it progressed, I really started to get scared that I would never get my life back. Then, when my 2nd rheumatologist mentioned RA, I began to fear just exactly what you are experiencing. Joint/tendon destruction is forever, and even though they can repair many deformities, the function and mobility are never quite as good. It is hard to be not too terribly pushy, but yet assertive enough that you advocate in your best interests. I tell patients all the time that they are their own best advocates, so they need to speak up if they are unsure or worried about anything. I think about what could have been if I had not electively had a thyroidectomy and my cancer was not found while still very tiny, or if I had ignored seeing spots late in my first pregnancy and had continued to work with a BP of 160/80, then had a stroke, seizures, or lost my baby from pre-ecclampsia. Not everyone knows to be thinking of these things. It is only because I knew, not just from my medical training, but also my instincts, that something was really wrong and that I had to speak up and seek appropriate treatments. How many of these near misses do laypeople have compared to those in health care? I’m certain more than we care to acknowledge.

    I had a bone scan last week, after which the radiologist was kind enough to invite me back to get further history and explain to me in person. I know they don’t do that for just anyone, and he was showing me VIP treatment. I get calls for additional history from radiologists all the time, but how often do they invite a patient back to their reading room for this? It showed increased uptake in all the places I was hurting most, which was validation, and I hope will be enough for my rheumatologist to agree to step-up therapy. I have also been taking pics of my joints to show him how they look when I flare. Unfortunately, I don’t have a lot of pics to compare back to from before RA. Some of them are more than obvious, though, and if it was asymmetrical, I photographed both sides for the sake of comparison. Encourage as many people as possible to be their own best advocates. It is stories like this that lend support and validity to those in doubt of themselves and/or their rheumatologist. But providers- physicians and midlevels alike- should also keep in mind something we were told time and again in training: treat the patient, not the test. Docs would do well to keep that in mind.

    I appreciate your comments and wish you all the best in finding an effective treatment strategy to avoid any further limitation in function!

  • Mariah Z. Leach moderator
    5 years ago

    Hi Jenny – Thanks so much for sharing your story. I completely agree with you that, as prepared as anyone can be to deal with the physical changes, the social and emotional consequences of RA can often take you by surprise. And as a fellow mama with RA I understand the additional demands having children can put on how you deal with your disease! I also went through a major denial stage that I needed to slow down (I was in the middle of law school when I was diagnosed). You are right that life with RA is a continued work-ii-progress. I hope that you continue to make progress in a direction that makes you happy!!

  • Andrew Lumpe, PhD moderator
    5 years ago

    Jenny, thanks for sharing your unique perspective as both patient and physician. While for some RA comes fast and hard, it seems to be common for many that the symptoms, test results, and physical impact comes over a long period of time. Up to 30% are seronegative (see this post http://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/). I started that way for a couple of years and eventually showed a positive RF and sed rate test (I “seroconverted”). As you mention, diagnosis is a clinical one and can be done without a positive RF or anti-CCP test if other symptoms are present. The good thing is that treatment can be started either seropositive or negative. Sorry for the impact on your life and you’re experiencing that nasty fatigue beast. Hang in there and keep us posted on how things progress.

  • Jenny author
    5 years ago

    Appreciate your comments! I had read that at least a small percentage were seronegative, but I did not realize it was that high. I think this is likely an increasing proportion of patients since the diagnostic criteria were revised in 2010 such that labs became less important, while the number and distribution of joints further emphasized. As I have done more reading on this than I ever wanted, for it would not have interested me to such an extent as for me to take a personal interest in the investigational findings and biochemical minutiae that typically are of import only to academicians, I have learned there are multiple minor players in the antibody melting pot. In future iterations of the ACR/EULAR diagnostic criteria, these may even be important one day. Thank you for your well-wishing!

  • Carla Kienast
    5 years ago

    I am adding my thanks to Teresa for sharing your story. We all have perspectives on the disease and it’s very interesting to get one from the other end of the stethoscope. I, too, am seronegative and I understand your viewpoint. You almost wish it were something else since you don’t have the lab data to reinforce the diagnosis or, for that matter, even show you’re having symptoms. RA is a journey and I have no doubt that with your insight and focus that you will find a path with a medical plan that will work for you. Good luck and thanks again for a great post.

  • Jenny author
    5 years ago

    Carla, I know what you mean. Initially I was thought to have UCTD, and I received the RA diagnosis only after seeing a different rheumatologist when I did not feel my first was aggressive enough. I did not know about the revised RA criteria that qualified me for the diagnosis until I looked into it further. I have plenty of symptoms, although most of them are not outwardly obvious. However, compared to those with more aggressive disease, my physical findings are minor. It is somewhat frustrating, but I know I will get better. Good luck to you as well!

  • Teresa Perret
    5 years ago

    Thanks for sharing your story, Jenny. We deal so much with medical providers it’s interesting to hear from a physician who is in the same boat. I know you know this from your training and dealing with your patients, but I’ll still say don’t give in or give up on getting that diagnosis. It can take forever and then even when you finally get it your insurance company is, more than likely, going to want you to try all of the older less expensive meds, like methotrexate and plaquinil, before they will approve a biologic for you. What I hope is that whatever you end up with works quickly and well. I had 6 great years before my first biologic failed, but many people have many more than that. Good luck!

  • Jenny author
    5 years ago

    Teresa, I truly appreciate your input. I actually have been taking Plaquenil and NSAIDs since the beginning, but yet my symptoms progressed. I saw a 2nd rheumatologist and sulfasalazine was added about 11 weeks ago, but I’m not where I want to be yet. I hope to avoid MTX, for a number of reasons. At this point, after 10+ months, I am tired of waiting on DMARDs, which are too slow for my busy life, and I’m ready to take the plunge towards a biologic. Again, the irony of the situation is not lost on me, as I was at the ACR conference that followed my preceptorship in 1999 around when the first biologics were being introduced. It was an exciting time, and it’s amazing how far they have come since then. Thank you, and good luck to you, too!

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