As a patient you should be Chairman of the Board when it comes to your own body, but working with several doctors and keeping them all on the same page with your goals and priorities can be a challenge.

Patients with chronic diseases and disorders are now more proactive and educated about their health and options than ever before.

There is an evolution and a revolution taking place and with it some growing pains as both doctor and patient struggle to adapt to a new paradigm and renegotiate the once traditional roles that have dominated the field of medicine.

Every movement from Civil Rights to Women’s Liberation has over time experienced a shift in the balance of power as the once less powerful party begins to take a more active part in the determination of their lives and their bodies.

It is to be expected that while this transition to empowerment takes place that there will invariably be some backlash from the party that started off with the most power and control and a resistance to relinquishing that which should rightfully belong to the other.

Today’s patient reads more research, and spends more time weighing their options and fine-tuning their plans for optimal health and quality of life than do their primary care physicians.

What was once traditionally viewed as over-obsessive involvement in one’s health is increasingly becoming recognized as a positive attribute not to be pathologized but celebrated and is rapidly gaining acceptance in mainstream medicine.

Naturally doctors may feel threatened given the redistribution of power within the doctor/patient relationship. Where patients used to look to the doctor for their sole source of guidance, many patients are not waiting for this edict and have now begun to take the helm in the diagnostic process as well as in matters of well-care such as diet, exercise, and alternative therapies.

Increasingly patients are publishing books, blogs, and even sometimes papers in medical journals as they become more sophisticated and better informed in areas once exclusively limited to doctors. They have begun to command an equal seat at the table on boards and decision-making bodies of illness specific organizations, and have carved out a niche for themselves as resident experts in online forums, support groups, and on discussion panels at medical conferences. 

At the same time many physicians have become so overloaded with the volume of patients they see on a day to day basis that they have little time to devote toward staying up to date on the latest practices and innovations in a given field and this role has increasingly landed by default on the shoulders of patients themselves.

Insurance companies pay less and demand more paperwork of doctors in the field and what used to be an hour visit is now 40 minutes, or even 20 minutes in order to generate enough revenue.

In this kind of high volume high pressure environment the focus over time often becomes more that of quantity at the expense of quality and as a result doctors may find themselves falling into a rut of repetitive and mundane chores that become tedious and tiresome. There is little incentive for doctors whose main bread and butter comes from performing physicals, tending to minor medical issues such as the flu and sprained ankles to be creative.

If  you are one of the lucky ones to have a DO or one of those rare doctors versed in chronic illness who can manage all the facets of your disease without need for specialists then it can be much simpler, especially when that doctor is working for you to make things go as smoothly as possible and understands just how important and valuable your limited stamina is.

If not, then you may find as your condition worsens that you do need to add in more specialists in order to get all aspects of your disease properly handled. This can work, but a patient must be prepared to be very assertive, be a good “manager”, and there is always the risk that some of these physicians can get away from you, going off in their own directions and those directions may run counter to what works for you.

The worst case scenario is when cross-talk between doctors without the patient included in the loop circumvents what the patient wants for him/herself and some of the doctors decide they “know what’s best” for the patient in place of the patient’s judgment. This sort of “mutiny on the bounty” can wreak havoc on the relationship between doctor(s) and patient, and it must be remembered that the patient should always remain central if this model is to work effectively. The patient should always be “head of the treatment team” and the doctors in a consultancy role; not the other way around.

While for many doctors in 2016 this is still a stretch for them to accept, it is the new norm and increasingly accepted in mainstream modern society as patients take a more proactive approach to their own healthcare. As in other relationships, sometimes 3 (or 4, 5, and 6) can be a crowd and dynamics can become sticky and awkward as each seeks to find his/her niche in the care of a patient they have in-common. For the patient who is ill this scenario can become like herding cats, a constant challenge to keep everyone on the same page (some of which may not readily accept that they in fact are there to work for and on behalf of the patient).

Traditionally doctors have been authority figures issuing their professional opinions and their directives with the expectation that their patients follow their lead, and so for some physicians adjusting to this new paradigm of deferring to the patient is a bitter pill to swallow and they have difficulty going along with it. This is why I put off bringing specialists into my care as long as I could. I knew that my GP was used to handling all my care for a number of years and he didn’t seem to like referring.

In retrospect I think the problems in our relationship all started when I began to see other specialists because there were certain things that were beyond his expertise. I began seeing him less often because it was necessary to work more intensively with my pulmonologist due to the fact that I had some worsening respiratory problems that became quite serious and I was in crisis.

This pulmonologist is especially patient-centered (despite what I’d heard about the specialty as a general rule), and he has helped me tremendously, working with me to design a plan of action that fits me as an individual. This is the type of physician someone with complex medical conditions needs on their team.

As time went on I filled in my GP as to what was happening and as it became clear I would need yet another referral to a neurologist and the pulmonologist wasn’t sure who to recommend, I asked my GP if he knew somebody who was good and his response was oddly irritable out of proportion with the request.

I thought he would be glad that I wasn’t keeping him out of the loop and that he was not forgotten in this process, that I was asking for his input, but instead he seemed hurt or resentful that I’d spent so much time working with the pulmonologist.

It was pretty clear that he felt displaced and responded that if this doctor felt I should see a neurologist then I should get a referral from him. He then went on to say that there are two connected with the sleep lab for which he works, and mentioned their names.

I wrote back on the Patient Portal to say that I also value his input and the other doctor really didn’t know any neurologists he could personally recommend and that he had limited contact and knowledge of these two who worked in the sleep lab. Also, I added, I did not want him to feel he’d been forgotten, that I would still need him regardless of the fact that I now require other specialists to get through this difficult time in my disease-process and I let him know how much I appreciated the referral because it may have saved my life.

He said he thought I misunderstood, but to this day I believe he was in denial or not consciously aware that he was in fact jealous of the relationship I had developed with the other physician. Maybe he was unaware or underestimated of how much his ego was invested in his being my go-to person and when he got into territories that were outside his expertise he felt inadequate to help me, so his frustration was displaced onto me, the patient. I hate that this has caused friction or conflict, but on my part I feel I have done what I’ve had to do to take care of myself and I meant no offense and was not trying to snub him in the process.

As much as I feel he has profoundly betrayed my trust that he would lash out in such a way; that he’d take such a low blow as to sabotage my treatment, I do not forget the way things used to be and just stop caring on a dime. Maybe that is what hurts me the most. If he wasn’t valued and I felt no attachment to him I could just say “so much for that jerk” and move on, but feelings are not that neatly dispensed with when one finds out the person you once knew has ceased to exist in the here and now.

I am still somewhat in disbelief that he could be so cruel and vengeful when his smiling face says otherwise. I’m struggling with these conflicting signals; the duality of a pleasant and effusive facial expression upon greeting that hides beneath it something that is anything but. I must acknowledge that in the time-span I sat in his office the other day his smile quickly became a sneer, and that I did see other visual cues that indicated his true demeanor such as eye-rolling (never a good sign that you’re being regarded with any kind of esteem), but nevertheless I am pretty gobsmacked by his change. While I know it happened over a period of months as my disease progressed, his disdain is thinly veiled now and it is unnerving, to say the least. And further disturbing; (according to his supervisor) he is the top-rated GP in Emory’s system, so I am left not knowing what to say or what to do because again, if he has chosen to focus all his frustration on me and continues to treat his other patients well, then I am truly alone. As much as I didn’t want to have to speak with his supervisor it was the only way to get him to do what he was supposed to do and to get these orders unstuck that were sitting there for weeks and some for months. I had been trying and trying to communicate with him to no avail, and at some point something had to be done.

I still need to follow up with her on the topic of his refusal to treat my dysautonomia and his overall treating me as irrelevant. If my pulmonologist can and will treat the dysautonomia (or Dr. V will do it) this part of the problem may be something that can be worked-around, but the issue of irrelevancy has to change for there to be any chance for us to work together in any capacity.

I cannot work with a doctor who treats me as though I’m a hypochondriac because I am fully involved in my own diagnostic investigation and I have to be able to openly discuss differentials with my doctors without being judged in this way. If he fails to see the value I bring to my own healthcare and fails to understand that my body is my domain then all truly is lost in the relationship. Carl Rogers, originator of Humanistic Psychology coined the phrase and the concept of Unconditional Positive Regard (which I believe is the cornerstone of the Patient’s Rights movement).

That philosophy says that human beings should be supported in their right for self-determination and that creating a safe, nurturing, and non-judgmental place for them to grow will engender healing. At the core the practitioner must believe that the patient is doing the best they can. If one does not believe this then he/she will eventually not be able to hide it in their interactions.

So based on this theory I must assume that my GP thinks the worst of me, and it makes me wonder what he held back, what he wasn’t saying in our last conversation that day in the office. What could he believe that would make no explanation I gave him sufficient, and invalidate all my symptom reports?

For that answer I need to know exactly what Dr. V charted or said to him directly (whichever it was), as it was based on her remarks that he diverged from me and decided not to treat my dysautonomia. This is where the herding of cats comes into play. I have placed a call to her office stating that I need Dr. V or her nurse to call me. When I receive the call I plan to ask exactly what was said and whether it was written or on the phone, and I’ll let them know the effect it has had and ask that anything damaging of a non-neurological nature be removed from the electronic record.

When such damaging events take place the patient must act swiftly and address them with each individual who has contributed to the damage to have them correct their part in it. Only then can positive constructive working relationships be restored and the focus go back to the task at hand. It is vitally important that every member of the “team” commit themselves to the unified patient-centered purpose identified by that patient, and not try to force one’s own agenda.

Members must not gang up with other physicians in an attempt to unseat the patient’s autonomy if this model is to succeed and a positive outcome achieved. The primary allegiance must always be to the patient because without trust the working relationship is illusory at best.