Proclaimer: I will be submitting this blog post for the ChronicBabe Blog Carnival #10: how do you deal with the medical establishment? My first entry ever to a blog carnival, so I have my fingers crossed, and I’m waiting to exhale. If you haven’t already, visit the Chronic Babe site: lots of positive helpful discussion, interesting folks, great information and the current blog carnival: The Big Breakdown: When everything goes to hell, what do we do?. And the next blog carnival “goes live” on August 10, 2010: there are sure to be brilliant, dynamite entries on dealing with the medical establishment.
I’ve had IBS (irritable bowel syndrome) since one evening in 1978 when, after sharing my special “two-days-to-cook” spaghetti dinner with friends, my abdomen blew up like I’d swallowed a basketball, not a plate of pasta and sauce! Several snooty, sarcastic specialists later, I accepted that my digestive system wasn’t going to cooperate. It was up to me to diagnose, treat, and hopefully tame/train the “beast in my belly.”
Fast-forward 20 years to a fall afternoon when, standing in line at the grocery store with a loaf of bread and a bag of potatoes, my right cheek area began to ache. Too many specialists later, I was diagnosed with atypical chronic facial pain; a term which equals “we don’t know why your face hurts.” By 2004, I had also developed atypical odontalgia (dental pain when no dental problems exist).
I came to hate the word “atypical:” that meant I didn’t fit neatly into any pain condition category. Then, purely by coincidence, I found a primary care physician (pcp) with whom I developed a good rapport and working relationship. She has saved my sanity: she listens, she believes, she encourages, she negotiates. The opposite of my experiences with the health care system/medical establishment up until 2004 (and beyond in terms of specialists).
Like many relationships, we had to work our way through the rough spots: miscommunication via email; difficult to deal with office staff; her busyness against my need for time; unavailable when needed on occasion; differing opinions on a specialist. We both have gotten angry: at each other; at my health care providers; at labs; at specialists. In the end, we exchange hugs when needed by either one of us; try to accommodate each other (her to be a good doctor and me to be a good client); be respectful of each other; treat each other like human beings, not a pontificating practitioner and passive patient. In other words, I have a human and humane pcp.
Other than becoming one of her patients, how can our relationship inform others dealing with chronic illness and chronic pain? What follows are our musings on forming a good working relationship. Disclaimer: these aren’t “magic bullets” that will solve all the tensions between doctor and client and these suggestions may not apply to your current situation. Having fought the medical establishment (including health care providers) for years, I understand how difficult doctor—patient relationships can be. However, maybe you will be able to take away from this some ideas on how to bridge the communications gap; to lay the framework for a relationship that works for you.
- short and sweet: it’s better to arrange appointments so that you have 1 or 2 issues to discuss; focusing on one or two issues makes it easier for the client (the term patient seems passive and client more active) and the doctor to deal with these effectively in the time allotted for the appointment.
- if there never seems to be enough time to discuss fully your issue(s), check with the receptionist; perhaps you can be booked into a longer time slot for your next appointment.
- medications: how do you and your doctor want to deal with prescription renewals: in office, via phone or email.
- if you don’t already, bring a list of your medications, dosages, and instructions to the appointment. (Some folks suggest bringing the actual medications along so that the doctor can see if you are taking them correctly by the number of pills versus refills).
- agenda: treat your appointment like any professional meeting by creating an agenda; what is your goal for that appointment? What questions do you have about your condition(s), treatments, and tests? Is this a follow-up appointment or discussion of a new issue?
- per arrangement, I email my agenda to my pcp several days before my appointment; that gives her time to look up test results, have medication scripts ready, be pre-aware of what I’m coming in to see her for.
- even if your doctor doesn’t want to see a copy of your agenda (ask, you never know), it will help keep you on track and give you a place to take notes while you are there.
- research, research, research: understand the medical terms associated with your condition(s); the medications, therapies, and treatments typically used; what tests are necessary; alternative and complementary medicines and treatments if appropriate; helpful resources.
- my pcp encourages me to do research and listens to my results. I realize that this might be very unique in terms of doctor-client relationships.
- learn all about your health care insurance (if applicable): each company should have a website and toll-free number to help clients find out information such as if a doctor is in or out-of-network, if a test or procedure is covered.
- before you have a test done, or make an appointment to see a specialist, fill a new prescription, or set up a date for a procedure, check how your health insurance provider handles the situation. It’s better to have to make another doctor’s appointment (and the extra co-pay) to sort something out, than to find yourself paying out-of-pocket, or out-of-network fees. Believe me, I know!
- tell the doctor if you can’t afford a procedure, medication, treatment; perhaps there is a cheaper alternative.
- coupons, co-pay discount cards, prescription assistance, samples, and generics: many pharmaceutical companies now offer deals on their brand name prescriptions. Check out their websites to see what they have to offer, including help with prescription drugs when you can’t afford the medication yourself.
- I pass along the information to my pcp.
- see if your doctor has samples and coupons: this way you can try a medication before investing in a full prescription.
- my pcp’s samples are also helpful when my health care provider has set limits on the number of pills per month.
- check to see if there is a cheaper generic available; but remember, generics don’t always work as well its brand name equivalent.
- if you don’t already, get copies of test results from your doctor and keep them on file at home along with your appointment agendas and notes:
- I track my progress on glucose and cholesterol levels, and compare current and past results. My doctor requested that the lab send me a copy of my latest blood test and she has forwarded me reports from cat scans, x-rays and dexa bone scans. It helps that her office is totally computer-driven: the paper files are down in the basement somewhere, and you check in on a tablet computer!
- if you don’t feel comfortable or aren’t given common courtesy or respect by your doctor or a member of their staff; if there are problems getting an appointment or speaking with the doctor; if test results go missing or files get misplaced (all of which have happened to me), don’t hesitate to look around for another doctor! If you didn’t like the service in a particular store or restaurant, you would probably go elsewhere the next time. The same can apply to the physicians you meet on your health care journey. (I realize that under many circumstances changing doctors might be difficult if not impossible.)
- is there anything that can make the relationship better for YOU (with or without the doctor’s assistance)?
- ask yourself why exactly are these visits uncomfortable, upsetting, frustrating, disappointing, annoying, etc. Is it the messenger, or the message, or both?
- speak up: have you told the doctor you are frustrated, annoyed, disappointed? Sometimes, I have just shuffled out of the office, muttering to myself, rather than express disappointment or frustration directly to the health care provider.
- keep notes during and about your visits so you can pinpoint where the issues are with the relationship.
- if the doctor uses medical jargon you don’t understand, ask for an explanation in plainer terms, and/or research your condition and treatment so you can be ready for the “doctorisms”.
- be knowledgeable about treatment options, new medications, new tests, etc and share your knowledge: your doctor, even a specialist, might not be aware of all the research, clinical trials, etc. that are going on in terms of your condition. (Of course, not all doctors respond to this gracefully.)
- see if your doctor is willing to discuss alternative/complementary treatments and therapies. Used in conjunction with tradition medical practices, alternative therapies such as therapeutic massage, acupuncture, and osteopathy can yield results in some situations. The relationship between alternative medicine practitioners and clients often is different from with the medical establishment as these treatments are more “patient-focused” from the beginning.
- some health insurance plans will cover alternative treatments; my doctor encourages me to consider alternatives such as acupuncture and massage therapy, but understands the out-of-pocket costs create difficulties financially.
- you are your own best advocate; ideally you and your health care provider(s) work as a team, not as opponents or adversaries.
I am lucky. My pcp and I are my pain management team. Together, we have found ways to deal with my atypical pain issues, my IBS, my depression. Like any good relationship, we strive to respect the other, to not put limitations or boundaries (on my treatment), to work together, to explore all possibilities. This relationship may be unique, but the lessons from it can be universal.
May your day have more laughter than tears.