To the Doctor Who Feels Helpless About Treating My Illnesses
I’ve been seeing a large variety of different specialists in most fields for many years now. Because this has been the case and my illnesses have only managed to build and become all the more complex, I know I have begun to make you feel helpless. I want you to understand, though, that this is not my fault.
This is not my fault, but it’s not your fault, either. However, it is incredibly frustrating. Of course I want to have a cordial doctor-patient relationship with you. I want you to care about my well-being and I, in return, will appreciate you and all that you do in your field. However, a lot of the time I feel as though, due of the complexity of my symptoms and all of the many treatments that I’ve already tried among various other factors, it’s not just me that feels hopeless. It’s you, too; you feel helpless.
I don’t want to make you feel bad. I know I am seeking out your expertise for myself and myself only so I “shouldn’t” even be concerned about your feelings. But I feel as though my continually saying:
“Nope, I’ve already tried that medication and had an adverse reaction.”
“I’ve already done that procedure and they didn’t find anything.”
“I’ve already seen that guy you’re referring me to, but thank you.”
… just leaves you backed into a corner that I’m not trying to put you in. Here I am, over in my own little corner of despair screaming out, “Please help me! Save me from this pain!” but also feeling bad because I’m shooting down all your suggestions.
What does bother me, though, is how a lot of you do begin to treat me like it’s my fault; you feel that I’m being non-compliant. Please understand that I am not being non-compliant, not at this point. At this point, I am rightfully denying treatments I’ve already tried that have proven to only hurt me. I am doing so because you’ve also forgotten half of my conditions. There is too much to keep track of and I’m afraid that you’re not giving this enough thought — that you’re missing something. I am trying to work with you because that’s all I can do at this point. It’s not my fault that I can’t let you take the reigns anymore, but it’s definitely not your fault, either.
I don’t want to feel like I have to apologize to all of you for the failed treatments, but I do. I don’t want to make you feel incompetent, but I also don’t want my choice to reject medications that I know have hurt me in the past because of factors A, B and C to be a poor reflection on me as a patient.
My case is complicated, and we both know this. But I need you to try to see the big picture from my perspective. All I want more than anything is to get better, or at least get to a place where I am able to function in day-to-day life. I know that’s what you want for me, too.
However, I need you to really listen before trying to label me as a “difficult,” “challenging” or “stressful” patient. I need you to recognize that I’m in a lot of pain, and that I truly am trying; it’s just that I’ve been doing so for much too long with no luck. I need you to understand that all of the invalidation that I’ve gotten in the past has been traumatizing for me; I need an empathetic ear. I need you to really try to understand my history and how everything looks and feels from my point of view. And I also need you to open your mind to the best of your ability, and recognize that I’m smart, too…
I don’t want to make you feel helpless, but I also don’t want to feel hopeless. I’m not attempting to act like I know better; I just want to feel better. This seems to be the reemergent pattern when you have many forms of chronic illness. At the end of the day, it’s neither of our faults — but it does require a lot of patience, understanding and determination on both ends.
I’m not a bad person; I just want to feel OK again.
We want to hear your story. Become a Mighty contributor here.