Brain injury survivors often have words that fail us at key moments, such as an important doctor appointment. Could be aphasia, but sometimes stress/fear prevents the words to ever form. After interacting with hundreds of brain injury survivors (mostly encephalitis), these themes surfaced that BI patients universally mentioned as desirable for their clinicians to know: 

1. We don’t expect you to know everything — I’m sure you’ve run across patients that lack patience. They think earning a doctorate degree means you are now a God with all the answers. However, the majority of us do not believe that way … especially those of us with a rare illness that got a 5-minute mention in one of your medical school classes 25 years ago. We just want you to tell us when you don’t’ know. It really is okay to say, “I don’t know, but your experience is very real” and give us alternatives to consider. The most frustrating experience as a patient is when a doctor treats us like a “head case,” leaving us to believe we’ve created this illness due to psychological issues. 

2. Prompt us on logical questions that we are not asking — Often when we receive new medical information, we are trying to absorb it. Maybe the terminology is over our head, so questions don’t form. Or maybe it’s disturbing to hear, so we “lock up,” trapped in a state of fear. If we don’t ask questions that you think we should be curious about, please prompt us, even if it sounds so simplistic. Something along the lines of “Often people in your situation ask about …” or “A common concern is …” Chances are we’ll embrace the thoughtfulness and extra info. 

3. Tell us how we can help you optimize our appointment — With more focus on the patient experience, maybe you can guide us in defining objectives for the outcome of our appointment. Maybe instead of us just reporting symptoms, you can help us prioritize the most debilitating or bothersome issues and we agree to address those as the top priority. As a close, reiterate your recommendations for other means of helping us improve beyond the appointment, such as therapies or changes in our diet. 

4. Behavioral therapy illustrates a patient’s desire to improve — Thankfully the stigma has changed that behavioral therapy is for “weak” patients or “head cases.” Therapy can have a tremendous effect on a patient’s emotional well being in the absence of medical answers or when a patient has just been diagnosed with a serious illness or disorder. Please consider this important means of treatment in all scenarios and not just when you think stress is a contributing factor to a change in health. 

5. Bedside manner means everything –– If you have to deliver bad news, are at a loss for the diagnosis or don’t have a magic pill to cure us, we know that’s part of your job. And that has to be one of the toughest “on the job” scenarios you deal with. However, if you’re compassionate … speaking to us on a human level vs. a degreed level, our patient satisfaction will be higher. We will recommend you despite how hard it is to hear the information or knowing that our journey is longer. At times, you’re a patient, too. How do you want to be treated? That’s all we want. 

In closing, we realize that treating us is, well, difficult!! Encephalitis survivors and other forms of brain injury all present differently. Nearly half of encephalitis patients don’t even have an abnormal MRI,making it difficult to assess the damage. And the etiology is unknown in more than half of encephalitis cases. These are all things that make treatment challenging. However, most of us just want more guidance in establishing a path by being a participant in the recovery. For most of us, it’s our first time in dealing with a brain injury, so we’re not sure where to start.  

To the best of your medical knowledge, which we understand is not boundless, guide us in preparing for what’s next. With compassion that acknowledges us as a whole person versus a set of symptoms, equip us with an informed and empowered recovery. What should we track to make the next appointment helpful for you? What questions should we have asked that we didn’t and why are those relevant? Should we be doing anything different in diet or exercise? And if we aren’t already working with a therapist, please direct us to one who can help us adjust emotionally to our new identity post brain injury.