“You scare doctors.” ~Dr. Rob Lamberts, talking about patients with chronic diseases
The majority of people who contract ME/CFS were healthy, active individuals before falling ill. They have had relatively little contact with physicians and with the health care system. Their idea of how medicine should work is based on popular concepts, many of which come from TV shows and the media. It comes as a rude shock to discover that doctors don’t have the faintest idea what to do with them. They are often treated as if they are making up their illness, and given standard remedies for depression, which only make them feel worse.
According to a study conducted at DePaul University in 2006 (Peterson et al), only 28% of medical schools in the United States include ME/CFS in their curricula, and fewer than 6% actually treat the disease. That means the vast majority of physicians don’t know anything about ME/CFS. Their opinions are often based on popular misconceptions, which characterize the disease as a form of anxiety or “burn-out.” Unless they are open-minded, they may never realize the true damaging potential of ME/CFS.
In spite of these drawbacks, it is important to have a physician who can, if not treat the disease directly, offer symptomatic relief. Physicians can also help track down and treat secondary infections, and uncover problems that may not due to ME/CFS.
HOW TO MAKE THE MOST OF YOUR OFFICE VISITS
It is important when seeing a physician, especially for the first time, to follow some guidelines. These can help your doctor avoid making a misdiagnosis, and can make your visit less frustrating.
- Bring someone with you, a man if possible. (If you are a man, bring another man.) Doctors tend to be more receptive when a man is present. Simply having a witness will put a doctor on “best behavior.”
- Write out your questions ahead of time. You won’t remember them after sitting in the waiting room.
- Keep your description of your symptoms concrete. For example, rather than saying “I’m exhausted” say “I can’t walk up a flight of stairs anymore.“ Physicians understand a cessation of normal activities, and there are certain limitations, such as the inability to walk up a flight of stairs, that are red flags.
- Don’t tell your doctor all your symptoms. Focus on the ones that are the most problematic. Your physician will be thinking of what tests to order as you are speaking. Too many symptoms at once will prevent him or her from ordering the tests that are most likely to yield results.
- Ask questions. If your doctor orders tests, ask what they are for, and what your doctor hopes to learn from them. Ask how your doctor plans to treat your symptoms.
- If you have a long-standing relationship with your physician, and you already have a diagnosis of ME or CFS, bring educational material with you – one or two sheets at most. Doctors have little time to read.
- Take notes, or have your companion take notes. Most physicians will post their notes online, or allow you access to them. It is surprising how many inaccuracies can appear in notes when a doctor is attempting to listen to a patient and type at the same time.
A DOCTOR’S ADVICE TO HIS PATIENTS
While the experience of seeing physicians can be frustrating for patients with ME/CFS, it helps to see things from a physician’s perspective.
Dr. Rob Lamberts, a primary care physician, wrote a letter to his patients with chronic illness. In it he describes, with some poignancy, the frustration doctors feel when treating patients with chronic illnesses.
“We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time. But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk.”
Dr. Lamberts is a physician who cares enough about his relationship with his patients to be honest. It helps to keep in mind that your physician may feel this way as well. To that end, Dr. Lamberts offers patients some suggestions:
- Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
- Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
- Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
- Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
- Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
- Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
- Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
Further Reading
A Letter to Patients with Chronic Disease, by Dr. Rob Lamberts
Peterson, T. M., T. W. Peterson, S. Emerson, E. Regalbuto, M. A. Evans, and L. A. Jason. 2013. Coverage of CFS within U.S. medical schools. Universal Journal of Public Health1(4):177-179. http://www.hrpub.org/download/20131107/UJPH4-17600991.pdf
Health Care Provider Information Letter for your physicians who
need to be better informed about ME/CFS. (Very useful) http://batemanhornecenter.org/wp-content/uploads/2019/11/BHC-HealthcareProviderLetter-live-002.pdf
Chronic fatigue syndrome: What nurses need to know (A good succinct article with all the basic information)