In one of our Goalistics communities, a woman with fibromyalgia commented that her doctor used air quotes whenever he used the term fibromyalgia. Sadly, this is a great example of a disturbed doctor-patient relationship. It seems as if the doctor either isn’t up to date on medical information or he simply chooses not to believe that fibromyalgia is a real condition. The patient in this situation has three choices:
1) Tolerate his ignorance, and hope for the best
2) Ask him why he uses air quotes, see where that conversation goes, and then evaluate whether you want to continue to see him, or
3) Find a different doctor
What would you do? The passive nature of Option 1 may lead to poor care. Options 2 and 3 are more active and offer more promise. Research shows that taking an active role in your care generally leads to the best outcomes. But sometimes it feels hard to cultivate a partnership with your doctor. There are a lot of issues to consider in developing a relationship that works. One way to approach the relationship is by asking what goals you each bring into the examining room. I want to touch on three common goals:
1) Time Goals. If you are like most patients, you want more time with your doctor. Your doctor probably wants to spend less time. Not because she doesn’t care, but because she is so busy. How can you remedy this? You can’t control your doctor’s time, but you can make the time together more beneficial by getting organized before your visit. Click here to open and print our “Get Organized” form. Fill out the form a day or two before your visit. Think carefully about your goal for the visit and write it out in the space at the top of the form. Be as specific as you can. Instead of saying “I need help with my pain”, try “The pain in my knee has gotten worse and I would like to understand why. I wonder if I need another MRI.” If you have more than one goal, list it, but don’t expect to accomplish too much in the short time you will have with your doctor. If you need more time, schedule a second appointment.
If you have questions about your previous visit, about your treatment, or anything else, write them out in the second section of the form. Take notes during your visit in the third section of the form. The remaining sections include information about the history of your pain. Use this only if your doctor asks for it. You want to be prepared
for questions, but you don’t want to get sidetracked by giving information that isn’t requested. For example, if you have your medications written, you won’t waste time trying to remember them. So, do not go in and thrust this form into your doctor’s hands. Make a copy in case your doctor requests it. But use the form to organize your visit. This will help you to use the small amount of time you have more effectively.
2) Pain Medication Goals. Many physicians have fears about overprescribing pain medication. Talk to your doctor about this issue and find out what his goals are for pain medication management for you. Before this conversation, decide what your own goals are regarding pain meds. “What kind”, “how much”, “how often”, “how long” are good questions to ask yourself before meeting with your doctor. Also, what are the costs and benefits of pain medications?
3) Treatment Outcome Goals. Chronic pain treatment sometimes results in a person who is pain free. Both you and your doctor may want that to be your outcome; depending on your condition, this may not be a realistic goal. Talk to your doctor about what you can realistically expect. It can also be helpful to talk about the amount of time it may take until you notice some improvement.
My option in this situation, and the option I can’t stress enough is option three, FIND ANOTHER DOCTOR.
In my experience, the majority of patients do not understand that when you go to the doctor you are paying that doctor for a service. You have made an appointment and engaged a doctor to service you and your needs. You are paying for expertise and experience, This should be respected, there’s a reason we aren’t all doctors, but you should also be respected as a customer.
You are not paying to have yourself not taken seriously. You are not paying for your questions to be treated as an affront, a waste of time, or not taken seriously. You are not paying to have your concers or fears mimimized. And you are absolutely not paying to be rushed through an appointment.
When you book an appointment, you are booking a specific amount of time. If you don’t already know, before you make an appoint ask how long the appointment is for, if you’re happy with the answer, schedule one. If you are not, question the office. If you are unable to come to an understanding, think about finding a doctor that will schedule a period of time you feel is more approriate.
When you are at the appointment, wear a watch and make sure you have the doctor’s attention for the full amount of time you have scheduled. No exceptions. Most standard follow up appointments are 15-20 minutes, which isn’t very long. You should easily be able to use the full time slot. If the doctor does not stay engaged with you for the full appointment time, you’re paying for services not rendered. Would you take your car in for an oil change and pay for it when no oil was changed? Of course not. Your doctor appointments should be treated the same way.
On the other hand, it’s your responsibility to respect the time of your doctor and make efficient use of the time you have scheduled. After all, you are your own best advocate. You know your body, you know what’s going on, you must be able to discuss the situation clearly and concisely. You must also take responsbility for doing your research. There’s tons and tons and tons of information out there, educate yourself and then take your questions about what you’ve read to your doctor.
Make a list of questions and concerns, be proactive, do everything you can to engage in a productive conversation during the scheudled appointment.
But most importantly, never pay for services that have not been rendered.
Azurelle – you emphasize the “get another doctor” option and you are the very first person I have come across that shares the “I’m hiring you for your expertise, doc” attitude that offends many doctors, but also weeds out the ones you don’t want to be working with. The two very best doctors I ever had allowed me to express what I wanted, and then told me how it could, and sometimes could not, be done. I have used the “get another doctor” option several times. (These are simplified to save space) I went to another doctor just in time to get a gangrenous gall bladder removed. I went to another doctor 30 days after a failed hand and foot surgery and the second doc made it last 25 years. I went to another doc about my pain and got the first truly effective support. Linda, here is where patients really need support. If you are a chronic pain patient, you WILL be labeled as “drug-seeking” (even if you do not get narcotic pain relievers) in many areas of the country. In Santa Cruz I was able to be a good consumer and get the right fit. Now that I am in Portland, it is almost impossible to switch doctors even within the same pain clinic if you and a doctor do not “click”. It is only going to get worse and patients need help!
The best one I heard from a ‘doctor’ I went to for the first AND last time was
” Pain is overrated.” I could not believe a doctor said that to someone. If he was joking, it wasn’t funny. If he was serious, the thought he was in the medical field was scary, to say the least. I didn’t hang around to find out which he was.
For two years, the most frustrating question from my doctor was “describe your pain”. My response of I hurt all over wasn’t very helpful. BUT, I kept working on the answer and finally was able to explain to my doctor what my pain is like. For me, pain is like music playing, sometimes it is background music (always there); other times it is an angry teenager that has just discovered heavy metal music (so loud that I can’t think or function).
Judy – I think many people share the frustration of communicating what their pain feels like. Your music analogy is wonderful – it describes the changes in intensity and impact so well. Thanks for contributing
Judy – your description of pain as music is one of the top three analogies I have ever heard. I would your and Goalistics’ permission to use that suggestion to people that I may speak with about chronic pain. If you are not OK with that, that’s OK too. Still a FANTASIC description.
I agree with the background music description. I think we all have experienced that discomfort. As a chronic migraine sufferer I have trouble describing my symptoms and when they change that is just as disturbing. The key for me has been finding people who will listen and accept. A headache specialist has been a must. Don’t sette. Don’t give up and being organized when talking with you MD helps.
Karen,
You are so right about not settling and not giving up. I think one of the best things I’ve learned from being a chronic pain patient is that you don’t know what is going to work for you until you find it. We are all complicated machines & so different that different things work in different ways for different people. FOR ME: I have tried osteopathic care (works), orthopedic care (worked some), cranial therapy (worked but only to a point), neurological care with drug therapy (works) acupuncture (works but not long term), massage (works but not long term), homeopathy (helps when I’m in crisis mode), light therapy (helps in the winter), etc.
My key message here is: if trying something new isn’t going to hurt you (and isn’t a total scam), then try it, it may be the key to moving to the next step of recovery for you.
Karen – this is one of those “this is my story” things, but I was surprised at this in my own case so I will mention it here. After something as apparently silly as having my head slammed into the sloped interior roof of a car that hit a pothole in the winter, I ended up with about 6 weeks of pain as expected. I already had a back problem that kicked up once in a while and I had also had migraines as a “tween”. So when I started to get migraines again, I attributed them to the stress of learning how to control a submarine nuclear reactor and having rotating shifts, a 120 mile bus ride every day I went to “the site” and back and family issues all at the same time. The headaches were always the same and always seemed like a migraine. I kept having these headaches from 1984 until December 31, 2008. That is the day that I had the discs between the C5 — C6 vertebrae and the C6 — C7 vertebrae replaced with artificial discs. I have not had that headache since that day. Note that artificial discs do not require spinal fusion and therefore have a significantly faster recovery time. The only outward sign I had the surgery is a 1.5 inch scar on the left front of my neck that the doctor hid in an existing crease. I went back to work five days after having the surgery. One of my coworkers told me that I looked like a new man.
Hi Jack, I have never heard of artificial discs??? Could you please tell me where you had this procedure done??? I live in Pickering, Ontario Canada.
Thank you in advance for your reply.
Sincerely,
Patricia
I started reading this blog very recently and I already received some very good advise!
Learning how to describe my pain was a difficult process and took quite some time!
I am working on finding a new primary care doc, since the current one told me a few times that he ” has nothing else to offer”!? Suffering from chronic pain since 2005, I have had numerous treatments, specialists, and meds to go through, yet my pain is increasing and little hope of finding true relive!
I will continue reading this blog and hope to find some answers! Thanks all
Hello Monika,
I am so happy that you are finding information here that is helpful. It is hard not to get discouraged after going through many medical options. There are many non-medical options that I talk about here that will help you to achieve improvement that can make your life better.
Monica — don’t give up! Managing pain has many aspects. Some are personal, some are medical, and some are psychological. Someone said “when you’re going through hell, don’t stop and set up camp”. While some find total relief, depending on your situation you may find that success is defined as managing your pain not eliminating it. It’s easy for someone else to say “set realistic expectations” but what does that mean? First it means you are probably not going to find one person with one technique that will cure your pain. Next it means you have to learn to look inward for your solution. That starts by listening to your body and learning what it has to tell you. Your body will tell you what hurts and what feels good. Start with the basics — are you sitting, working, lifting, even lying down — in a way that is causing you pain? For example, many people watch TV in the evening while lying on their couch. When you look at them their head is about ready to pop off sideways because they have a resting on the arm the couch instead of keeping their entire spine straight by scooting down and using a pillow. If something else is causing that pain, then pay close attention and work at describing it in every way you can think of, writing it down as you go. If you have a personal voice recorder of some type keep it with you and every time you feel pain describe what you are doing, what the pain feels like, exactly where the pain is, and if the pain is causing other things like muscle cramps or headaches. I could go on, but I hope you can see from this that you and your brain can be pain’s worst enemy. Even the best doctor is only as good as the information that you can provide to them.
Linda – your form and suggestions are great. May I suggest that you make a version of that form that can be filled in on a computer (normally done with Adobe Acrobat or even MS Word) so that those of us who have trouble writing or use voice recognition can fill it in? If you would like, I would be happy to privately send you the format that I use EVERY time I see a doctor. It might give you an idea regarding the amount of room and specific things that need to be recorded. I always carry three copies – one for the nurse so that the med check can be done easier, one for the doctor and one for me.
I lost my medical insurance,and have been in chronic pain,and worsening for 6 months. I go to a free medical clinic,and they seem to treat only minor problems. I am getting sicker,and have no relief from this relentless pain,and think most doctors see you as a drug seeker and don’t want to treat pain. I don’t know how much longer I can take living like this. I think it’s all about money,and if you are one of the unfortunate,that have lost your job,your health is in big jeopardy.It is a shame,that a person,that doesn’t have access to health care,should be denied, being treated with respect,and valued as a person. Please say a prayer for all those living with pain and sickness,that just have to live with it.