If I was a presidents spouse/daughter, would you treat me differently? Would you look at my chart, see I have a rare illness, and ask me about it and look it up or would you assume I’m making it up just because you haven’t heard of it or only know a couple things about it?
If I were an Olympic athlete, would you treat me differently? Would you just instantly respect how hard I work to take care of my body despite its genetic flaws or would you assume I’m not trying hard enough because I’m still sick?
If I were a NBA players spouse/daughter, would you treat me differently? Would you still belittle my symptoms because they aren’t common and insinuate that I am a hypochondriac or would you think more carefully about your words and tone of voice?
If I was the hospital directors spouse/ daughter, would you treat me differently? Would you assume you know my body better than I do and just continue to treat me your way or would you be more patient with me and listen to the important details I have to share?
Doctors, if I was your spouse/daughter, would you treat me differently? Would you allow the doctors on my case to stop a treatment that is working simply because they do not understand your spouse’s/daughter’s diagnosis or would you fight for their treatment just to be made a fool of while being told “I’m sure if you left today, your daughter would still wake up in the morning…” even if she wasn’t strong enough to go home (or might have to come right back in the following day?)
Because I am a patient with chronic illnesses that are not common, YOU TREAT ME DIFFERENTLY.
You assume I am a “nervous nelly” because I am scared that my blood pressure (that you can see) is higher than it’s ever been and keeps suddenly dropping ridiculously low at its own will. You assume I am a liar because even though I have passed out 3 times before coming to the emergency room and have passed out 4 times since being here but because my o2 doesn’t change “I must be faking it.” You assume I am an attention seeker because I need oxygen for my chest pain that makes it hard to breathe, and focus because my HR is rising and dropping between being really high and really low without stopping. You assume I am a hypochondriac because I need IV fluids even though I can only drink 1/2 a L of water in a day and my blood work shows I am technically hydrated; except you forgot to remember that I need 2-4 L of water a day- not 1/2-1L a day like most- to keep my body going, and if I can’t get that amount because of this flare MY BODY is ACTUALLY dehydrated.
Now if I was any one of those spouse’s/daughters listed above, do you think I would have been treated that way for a significant POTS flare?
Just because neither I, my husband, nor my parents are famous does not mean I should be treated differently in my care. Doctors, I understand treating chronic illnesses are extremely complicated whether you are working inpatient, working in an outpatient practice, or in the emergency department. I understand that I have some “rare” classified chronic illnesses that you may have never heard of. I understand that you feel lost when you hear my medical history. I understand that you wish I wasn’t your patient because you know I’m not going to be easy with all my allergies and restrictions. I understand that you would much rather treat an acute problem that you know you can fix. The good news is that if we put our skills together I will get a lot better and we will both have a good experience. I know my body and I know these diseases, I fight them everyday and have been for years. Once you know what I have, and learn what works for me we can make a great team. I can learn from you and who knows you might even learn something from me.
So when I next see you, will you still treat me differently?