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To the Doctor Who's Been 'Saddled' With My Case

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You don’t want me in your office. I know you have been “saddled” with my case by your partners who have all had their turns – and have given up on me as a patient. I know you did not ask to transfer my case. I know others reassigned me, yet again. I see it in your eyes, in your posture — I hear it in the tone of your voice.

Please, just listen.

I know you think you already know what my issues are. I know this because you are telling me to eat more fiber, use Zantac for nausea, turn off the computer at least 30 minutes before going to bed. These are the same things countless others have told me before.

You are trying to fit me into the box of the “average” patient. But I am not “average” or typical. I have never been. The “usual” treatments have failed. I have tried them all – that’s why I am back today. My issues do not – cannot —fit the typical pattern; they are a mosaic of interconnected, convoluted medical problems. My symptoms are not caused by the medical conditions you typically treat. Don’t try to force me into a typical treatment plan. I don’t need another symptom Band-aid. I need a comprehensive wellness plan that addresses all of my medical issues.

Please, just listen.

I know you are already thinking of your next patient. You are busily writing a new prescription before we have even begun to talk about my current status. You are telling me to take better care of myself.

Don’t you understand that is all that I do? All day? Every day? I have brought my journal and my symptom tracker. I need to discuss why I may currently be improving in some areas while declining in others. I have carefully and relentlessly recorded my behaviors and my medical responses to those behaviors.

I am working to manage my conditions in the best way possible. I don’t want another pill that only masks my symptoms. I don’t need to add even more drug interactions and potential side effects to my long list of medical issues that require daily management.

Please, just listen.

My case might concern you because you think I will become a “bad outcome” statistic in your otherwise successful record. You might be concerned that will cause problems with the insurance companies and the hospitals where you maintain privileges.

I know those statistics are not designed to adjust for people like me. People with lifelong, serious medical conditions. I’m sorry this causes you concern. I don’t want to be a burden.

Understand that I didn’t ask for this life and I didn’t cause it, either. I was born with these issues. I have spent more than 40 years coping with my conditions. I cannot control my body or its functions. I can only manage it — which I strive to do in the best way possible each and every day.

Understand that I want to help. I want to avoid becoming that statistic just as much as, if not more than you want to avoid becoming culpable for that statistic.

Please, just listen.

I know the current healthcare system requires you to treat too many patients, forcing you to treat all of us generically. I know you did not have time to read my chart or learn my history because you just asked when my last menstrual cycle occurred. I see your embarrassment when I answer 1992. I see your frenzied eyes as you scour the computer screen searching for confirmation that, yes — 1992 was the year of my hysterectomy.

Know that I am an expert in my particular case and my extensive history of care. My years of interaction with doctors, hospitals, nurses, other health care providers have made me fluent in medical terminology. I understand what my diagnoses are, how they affect my bodily systems and how your treatments work to support and improve my those systems.

I have worked hard to learn this information. I have had to — and I am capable of providing a succinct, informative summary of my case to teach you what you need to know quickly.

Doctor, please. Stop. Listen. Hear me.

Let me tell you everything I am doing to improve and maintain my health. Let me tell you the symptoms I still struggle with and need your help to manage better. Let me tell you my triggers and what I am doing to regulate and control them. Let me tell you how the myriad of medications I have to take creates overlapping and challenging side effects. Let me tell you my ideas for what I can improve. Let me ask you the questions I have so I can better understand where I need to focus my efforts. Let me discuss the latest research findings with you so we both know what to change, what to keep, and what to stop.

Don’t think of me as just a patient. I am not. I am much more than that. I am your partner in this journey. I own everything that I am experiencing, both good and bad. I hold myself responsible for my care; you are my guide, my learned scholar, my teacher. You are not a miracle worker. I know that you can not “cure.” I am neither searching for a miracle, nor a scapegoat.

Doctor, please – just listen.

Originally published: September 26, 2016
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