Being a person who lives with an incurable disease, I have spent my life, save for the several years spent without insurance, sitting in the doctor’s office. I have been the patient of many a doctor and have experienced the many different personalities of doctors. They are all human, and therefore they act human, faults and all.
What advice can I offer doctors? What advice can a patient with an incurable, life-galling, and often heartbreaking disease offer to doctors? A lot:
1. Be compassionate. And always show it! There is nothing more terrible to someone who is already suffering and struggling than to have to sit in an office and listen to someone who is supposed to be helping you tell you how you are a failure, how bad you are at doing what you need to be doing. There is nothing worse than a doctor who is harsh, malevolent, unfeeling, and just plain mean. What we need is someone who is on our side and kind about it. Someone who does all they can to show empathy, and share their knowledge. What we need is kindness and help. And we really need to know that you see us; look into our eyes when you speak to us, say our name without having to look at our chart first. And, please, be understanding of our constant struggle. We aren’t just sick when we come into your office, we live with this illness all day, every day.
2. Be knowledgeable, not a know-it-all. Be willing to share your knowledge. We have to live with this disease everyday, all the time. Not just when we are in your office. So, please, if you have the knowledge, send us home with it! Don’t just order tests and prescribe medication/treatment, but not tell us why or explain what it is we have to deal with. I need to be able to understand what is going on with my body. I need to be able to say “I’m on this medication because of this problem and the medication helps by doing this for me.”, etc.
3. Remember that you are not my only doctor. People with chronic and incurable illnesses often have multiple doctors for multiple reasons. So take into consideration that I may have medications prescribed by another doctor, I may have tests, procedures, treatments that have been ordered by other doctors. Study my case, get all the facts, and make sure your course of action for whatever you are treating me for doesn’t nullify or react badly with something else being done to me or taken by me, etc., or aggravate some other illness or condition I have!
4. Remember, I don’t want to be sick! I don’t want to suffer! I don’t want to trade my current suffering for the suffering of drug side effects, living in a hospital, or complications of surgeries! I come to you to be helped, to feel better, to get healthy and stay that way. I know you are not a miracle worker, and I don’t expect you to twitch your nose and cure me. So, please don’t see me as anything other than a fellow human being who is trusting in you to not make things worse for me.
5. Listen. I don’t know how many doctors I’ve had that just go through the motions. They walk in the door and ask, “How are you doing?” And then don’t even listen. Give me enough time to explain why I have come to you, listen to what I am telling you. I know you just want to know the facts, but sometimes there is a back story, something linked to the current problem, or maybe it is a recurring issue. Who knows, but please, listen. I know you don’t have all the time in the world to spend with me, but sometimes it’s better to take a few extra minutes to listen than to pay when you go to court for malpractice!
6. Being a doctor is tough. Living with an incurable disease is tough, too.