Please listen to me. Look at my lab results, check my scans, review my tests but, please whatever else you do, just listen to me. Listen to me without judgment. Listen to me and help me figure out what is wrong with me. This is why I am here. I need your expertise, I appreciate your expertise but, I also know how complex the human body is. I know this because I live with a rare and often misunderstood disease called sarcoidosis. I know this because I might very well know more about my disease than you do and, I certainly know more about my body than you do. We must work as partners, you and I. If we don’t, you cannot help me. So, please listen to me.
You have pieces of the puzzle because you know how to interpret all those tests you ran on me. You have pieces of the puzzle because you spent years in medical school and you know things I don’t. I understand this. I respect this. This is why I am here. Remember though, that I know things too. I am the one who lives inside my body. I know what is normal for me and what isn’t and, when I tell you something isn’t normal, despite whatever your tests might show, I need you to listen to me. I am not wrong. I am not making it up.
Doctor, please don’t be threatened that I am knowledgable about my disease and my own body. Please don’t get defensive if I ask you pointed questions. I want to understand what is happening to me. I deserve to understand what is happening to me. Maybe you don’t know. If you don’t, I promise I won’t think less of your skills as a physician if you just say so. It would actually be a refreshing change from being utterly dismissed as a liar. I’ve lived with a rare disease that does strange things to me long enough to know how intricate the human body can be and that at times it is a vexing and imperfect instrument. It seems common sense that tests results are as much to rule something out as to rule it in. They may not always match what I am saying. So, please listen to me.
Exam me Doctor. Don’t be afraid to touch me or look at my body if that will help you better understand why your test results don’t correspond with my pain. My pain is real, Doctor, I promise you that. I need for us to work together to find out why. How can we address my pain if we do not understand the cause? I am not looking for a quick fix, Doctor. I just want the quality of my life to improve. Doctor, do you think that is unreasonable? Doctor, I need you to engage me as an equal, to let go of your arrogance and self proclaimed righteousness that you are superior to me. You are not.
Doctor, I understand that when I tell you this needs to be a partnership, that I must also do my part. I must be self aware. I must be willing to listen, too. Doctor, I don’t want a stopgap measure to address my pain. I don’t want a makeshift solution. I do not want to spend the rest of my life chasing pain relief. I want to know the cause of my pain and I will make lifestyle changes and I will work hard to do what is necessary to address my pain if you will only help me better understand it and work with me to find the best least invasive way to address it. Let’s not go to extremes just so you can get paid or get me out of your office.
I want the very best for myself, just as you would if you were the patient. Doctor, please try to understand that. Not every patient that comes to see you is one size fits all. Not every patient who comes to see you is a drug seeker or a liar or an attention seeker. Please don’t be cynical, Doctor. I am here because I need help. Please, listen to me. Let’s work together to improve the quality of my life. After all, isn’t that why you went to med school in the first place? To help people? The best way to help someone in pain Doctor, is to listen, listen when an open mind.
I’ve said my piece. It needed to be said. Now all I can do is hope, Doctor, that you will listen.