Dear physician who doesn’t understand your chronic illness patient,
Hi it’s me. The twenty-something year old female in room 452 with Multiple Sclerosis. You claim you and your service know me. You even take the time to dictate it in your H&P that I’m well known to your service. You come in, like previous admissions, ask the same questions without listening to my response, do the same exam as always, ask confusingly why I have spasticity and no complaint of weakness. I explain for the 14 time I have severe spasticity, severe enough to require a intrathecal baclofen pump. You claim to remember, then tell me it’s not typical for my disease. I know this. I didn’t choose this symptom. I didn’t chose this disease . I don’t like to be a patient. I don’t want to be sick. Sometimes I wonder if you know this. You continue going through your typical spill, telling me the subjective symptoms I say I have don’t add up, how you feel this isn’t really qualifying for a “typical” MS patient. You ask me if I’m still taking my medication, remind me how I’ve failed or been unable to tolerate medication x,y, and z which once again is “odd”. You tell me that these symptoms, this onset of blindness in my left eye is “just part of MS, that there is no need to proceed with steroids because it won’t change the outcome at this point.” Because I shouldn’t be having this happen again. Because the MRI didn’t show any new active lesions so this is only a “pseudo flair”. I remind you it’s been over 24 hours since symptoms onset, that all labs, urinalysis, and chest X-ray didn’t indicate an infection which is the number 1 cause of a “pseudoflair”, that my MRIs are still showing new lesions even after trying medication x,y and z and that my left eye is unequal at 8mm and non reactive to light. At this your mood changes and shifts and you tell me it’s secondary to the drops ophthalmology put in. Even after I tell you that is incorrect, this presentation was my reason for admission and that ophthalmology didn’t use dilating drops in that eye, and said it was their belief that this was optic neuritis, you turn cold and say well it’s not a true MS exacerbation and we are signing off. You leave the room shut the door and leave me in pieces. You break me. You make me feel crazy. Like a hypochondriac. Like I’m manifesting these symptoms. Like I want to be sick.
But what you don’t know about me, or care to take the time to know about me is I’m one of you. No, not a physician. I didn’t put in the time, the schooling or the years for that. I respect you for that and I congratulate you on that. I appreciate your profession for that. But I am someone who wanted to study the beauty that is medicine, I was drawn to the science of it, the art of pathologies, I was also born with the desire to help people. So I became a nurse. Life was perfect. Until I got sick. Until you gave me this diagnosis. Until I started spending what feels like more time as a patient than a nurse. It’s been 3 years and still you haven’t “fixed” me, or even helped me.
But what you don’t understand is why you may not truly know me, I know who you are. I walk these halls as do you. No, not as a physician, but as a nurse. Someone who sees the same scenario happen with other patients. Whether it be seizures, transient weakness, acute onset of confusion, or stroke symptoms. I see this similar scene happen. Because I’m the one, that stays behind in the room after you leave, to pick up the pieces of the patient, and the family that’s left with fear, dumbfounded, and confusion after your exit. I’m the one, who reassures them that there is indeed something wrong with them, their mother, their father. I’m the one who explains whatever diagnosis you just handed them that will forever change their lives. I’m the one who offers reassurance, hope and support that they will get through this moment. Yet I’m the one that when you leave my room, after dismissing my fears, my concerns, my symptoms, can’t pick up her own pieces, or even find it within me to fight my for myself anymore.
Luckily this is where my people come in, my tribe, my team, my group of individuals who are my saving grace every single day without even knowing it. They come in forms of childhood friends, coworkers who turned into family, physicians, and family. They become my voice when I lose mine due to your words. They are my advocate when I’m too tired, broken and confused to be my own.
And this is where my story has a happy ending. No, not because of you, or your team. But because of your lack of care, lack of knowledge and lack of expertise it lead me to seek a higher level of care, it lead me to one of the leading Multiple Sclerosis Specialists not only in the state and country but the world, it lead me to someone who cared, who saw that something was seriously wrong, who personally reviewed my MRIs and saw the problem immediately, and who has worked tirelessly to find the right treatment so that I may have my life back, and rejoin you in walking those halls.
So please don’t take this as a request for an apology or my attempt to make you feel bad, because that’s not the intent or goal at all. I don’t need nor want either of those things from you. But I do hope you will remember my case, your actions, your words, and that every time you come in contact with a patient from now on, you stop and remember that person in that bed, in that office chair in the exam room, is someone’s person. They’re an aunt, a friend, a daughter, a sister and a human being who is clinging on your every word and trusting you to have the answers, solutions, and just simply validation, that what they are experiencing isn’t right and that something is wrong. Remember that. We as patients, know you’re human too, therefore we don’t expect you to have all the answers, and if you don’t, that’s okay. But instead of dismissing someone’s symptoms, someone’s suffering, show us that human side of you, admit you don’t know why what’s happening is happening and be human enough to admit it and refer us to the next specialist who just might be the one to change everything.