We Need to Talk About Patient Guilt in Healthcare

The doctor walks into the room and the dreaded question is uttered out loud, “How are you feeling?”

My mind races and my heart sinks. I had dreaded this appointment and that question during the week leading up to this appointment.

Do I lie and say that I’m fine or do I tell the truth?

I’ve been taught lying to the doctor only hurts me but I don’t want to tell the truth. I don’t want to the doctor to hear the truth.

Let’s step back and let me tell you how I got to this point. I’ve been seeing my rheumatologist for nine years. The only relationship I have had that is longer than this one is my marriage — but only by a few years. Honestly, my rheumatologist knows me better than my priest at this point in my life. I see him more frequently than I see my immediate family. So I pause, struggling with my emotions…how can I lie to him?

This is my monthly follow up appointment. I’m on a monthly schedule because I’m not in a good spot currently. I also have a rare overlap combination of autoimmune diseases that require a little more attention. We have worked for nearly three years to stabilize my health. We have tried different combinations of drugs, and we have gone back to drugs we have tried in the past. My team has relentlessly worked to provide me quality of life and to patch me together until the FDA approves something more effective for my conditions. I am truly a blessed patient to have such a team and rheumatologist, and I know the relationships I have built with my providers are special ones.

So, back to the question that has haunted me, “How are you feeling?” I started back on an infusion therapy a couple of months ago. I spent two days for a total of 20 hours in the infusion center trying to find stability. Still, my blood hasn’t improved and the way I am feeling matches my current blood work. It’s all lousy. There isn’t a better-sugarcoated word to use in this situation. But why do I want to lie to my doctor at this moment? In my soul I feel disappointment and I feel defeated, but deeper yet, I feel patient guilt.

Let’s talk about patient guilt.  Patient guilt is something a patient feels when their medical team or doctor works so hard to help them and they don’t feel relief. The team or doctor invests time into this patient’s health and quality of life, they invest research (talking to their colleagues, reading recent papers, running the case by meeting attendees) and they invest themselves. The patient feels guilt but not because of something they have done. The guilt they feel is on behalf of their body or immune system which is not cooperating with the plan of treatment. It isn’t anything the patient could avoid or anything the patient could have done differently. For many patients, treatment is a wait-and-see approach, especially when it comes to autoimmune disease. In this last month, I have tried to evoke the placebo effect, I have tried to convince my body it is better by speaking positively. The placebo effect didn’t affect my month at all though.

Patient guilt also encompasses blood work that doesn’t improve or pain that doesn’t subside, as well as heart problems or lung problems that don’t stabilize. It is sort of like the line Bob Wiley speaks in the movie “What About Bob?” He says, “I’m doing the steps.” It makes no sense to the patient and most of the time the team or specialist is puzzled as well. It makes no sense because the patient’s body isn’t responding the way the paper is written or the statistics are given.

Why would patient guilt make me want to lie to my doctor? Because, if I admit I am no better, then he or she may feel the same disappointment I have been feeling. And after a relationship with a specialist is built, patients want to protect that specialist. I think it is similar to the way a parent works to protect a child or the way spouses protect each other. It is easy to lie to friends or acquaintances when they ask “How are you feeling?” But lying to your doctor feels less like a little white lie.

So, as I answer the question I had been dreading for a week I find myself barely able to utter, “I’m sorry. I’m still sick.”