It seems like lately I’ve heard several people advise patients to be calm and professional in their interactions with the medical community at large. Don’t be angry. Don’t be rude.
On the surface these all sound very reasonable! But the more I heard it from various people and panels, the more it started to irritate me.
It makes me wonder if these rules aren’t sending the wrong message – or helping to perpetrate the idea that patients are invited to interact with the health care community as a novelty, a prop. Behave or your invitation will be revoked. This makes me think of a members only club with strict rules for guests – if you are lucky enough to even score an invitation.
We can say that patients are the keystone to the health care community, we can say they should drive their own care, we can talk and talk. But when the patient turns out to be a real, live, person that doesn’t always behave in easily controlled ways, then we become uncomfortable.
I would never advise patients to use anger as their first choice, but I feel like my frustration (and yes, anger) at the whole package of being a person with a chronic illness is what has propelled me to action: raising money for research, starting a support group, volunteering, attending conferences and interacting with online communities. If I had been able to pop a pill twenty years ago and go on with my life, then I would not be invested in improving the system or supporting others. Sometimes you can’t help being angry in public.
Patient anger should be a warning sign. Just as a fever can signal an illness, anger can be an easy indication that something is wrong. Anger can alert you to a situation that needs improvement. Anger can be an opportunity to help, if you allow yourself to be open to it instead of using anger as an excuse to reduce the patient to a single characteristic.
Being sick can frankly suck. It can be difficult to finally decide to drag your sorry butt into a medical facility (after carefully weighing your pain versus your copay or medical bill) only to be met with administrative staff who see you only as an impediment to their break time, billing staff that come in promptly with a customized cart to swipe your credit card, while pain medicine takes an hour to arrive, doctors who think you are a pill-seeker who doesn’t deserve to be in their facility, and rooms that are inhospitable to caregivers and patients alike.
Lest you think I am a paragon of saintly behavior, I’ve decided to share one of my own experiences. I’ve been living with chronic illness for just over 20 years and I can’t think of many times when I got really angry in the presence of medical professionals, but I remember one time when I told off an emergency department physician. Having a long term illness can weigh on you in many ways; stress compounds; money problems build (even with “good” insurance, co-pays can be expensive); being poked, prodded, and dismissed by doctors and staff can ding your self esteem; living in near-constant pain and sickness can chip away at your ability to stay strong all the time.
When I go to the ER it is normally a result of careful consideration on two fronts: symptom severity and money. Living with chronic pain can distort your personal pain scale. A 10 to me is “I am curled up on the bathroom floor and praying for death to release me from this pain.” Anything above a 5 and I’m still going to work. I can still drive at an 8, but it is probably not a smart decision. Usually when I feel bad enough to call a doctor, they advise me to go to the ER. The concern with Crohn’s disease is that pain may indicate a perforated intestine or other issue that needs to be taken care of. Pain may also just be a flare, inflamed intestines that are not happy, but don’t require hospitalization. If you have moderate to severe disease, you might have flares quite often. If a person without a chronic illness had symptoms like this, there would be no question: they would absolutely be going to the ER for relief.
On this particular day, I had been in pain for several hours. Pain medication (prescribed in very small amounts, and carefully guarded, for emergencies only) did not help. I was exhausted from fighting the pain in my abdomen for hours. Finally I made the tough decision to have my mom drive me to the hospital, an hour away. I’d been a patient of this hospital for many years. They had my medical history and surgical records. Several of the doctors and nurses recognized me. But that night, I got a doctor who did not know me. My doctor was male, which shouldn’t matter, but often contributes to my not being taken seriously. This doctor was dismissive, refused to do tests, didn’t even let me talk much, did not seem like he was listening. His bedside manner was to avoid me, letting me stay in the emergency department room that was too bright and uncomfortable with only a small chair for my mom to sit in for hours. The doctor made me feel as if, unless I was the victim of a horrific car crash, then I should not be in the ER. He made me feel like a drug seeker, just coming in to the ER for a fun time. I felt like he thought he was a hot shot and my chronic condition was not exciting enough for his time. I was told they were going to discharge me and I started to panic. My pain was not under control, I did not feel like my symptoms were explored enough, and on top of everything I would be paying a huge copay for basically no services. I was not even given a prescription for a day or two of take home pain medicine. This doctor did not want to understand me, or help me. I complained that I did not want to be discharged without getting my pain under control or understanding its source (flare or a bigger problem?). The doctor came in and talked about my “tummy” hurting… and I lost it.
“Excuse me? My “tummy” doesn’t hurt. I have Crohn’s disease, I’ve had it for over 15 years, I am an adult. I am in severe intestinal pain. Don’t talk down to me like that.”
I summoned all of my dwindling strength and self confidence and said I wanted to speak to a patient advocate. It was the weekend and the patient advocate was not there, so they sent a stand in to come speak to me. This person listened, allowed me to be visibly upset, did not become alarmed when I began to cry out of pain and frustration. I was not dismissed as a hysterical, silly girl. I was able to explain the stress that goes into the decision to even visit an ER, the hour drive endured to get there, the pain I had been suffering all day, and the concerns that the pain may signal a more serious problem.
Ultimately I filed a complain against that doctor and had a very constructive conversation with the patient advocate later the following week. Several years have passed and I am no longer a customer of that hospital system. Overall I still have tons of goodwill for their organization, but decided to move on for several reasons. This experience is something I will never forget and certainly colors my overall satisfaction with this organization. A hospital is only as good as its weakest link.
So who was right in this situation? I doubt the doctor learned his lesson. Being reprimanded by the patient advocate probably only made him harden his heart more toward silly girls with tummy problems like me. I am not sure my anger accomplished anything. But I am not ashamed and I do not regret my reaction. I was the victim of three things that day: Crohn’s disease and a poorly behaved doctor and a hospital that did not live its mission statement. It is okay to refuse to be victimized. It is okay to expect decent care and basic respect and it is okay to demand those things if necessary.
When you come across an angry patient, try not to automatically dismiss them. Listen to their concerns. Ask the right questions. Find out what you can do to help solve their problems. An angry patient needs your help, they just might not be able to ask in the manner you’d prefer. Don’t kick them out of your club.