The first thing that I want to say is how much I appreciate the type of medical care that I receive, and have received, living in Canada.
I know that, being a chronic pain patient, my chart/case is annoying, confusing, frustrating, impossible, and endless. I know that NO ONE can keep up with my list of symptoms, allergies, surgeries, or even prescribed medications. I know that not being able to 'figure it out' challenges your entire education based on medicine. I know that coming into the Emergency Room may leave you feeling at your wits end because you don't know how to help me.
I also know that I can sometimes get frustrated with you when you don't want to listen to my pain scales and theories and what I believe my body is responding to. I know that you have a wealth of knowledge about the human body that I may never comprehend, and so when you meet me and I challenge that knowledge, I may seem like I am purposely trying to piss you off.
But I am not.
I am not TRYING to be difficult or frustrating.
I am not TRYING to make your day worse.
I am in pain 24 hours a day, every single day of my life. There is a certain amount of pain that I can dull, a certain amount of pain that I cope with on a daily basis, and a certain amount of pain that I HAVE to resort to coping with daily - because I have no choice... Because we have not been able to find a cure or a better way to reduce that pain. So when that pain changes for the worse, or something stops working, or I develop new symptoms that I need help to cope with, that's when I turn to you for help.
Like you, I have studied aspects of medicine every single day for years. I may not know the textbooks like you do. I may not know the molecular responses to disease and medication. My knowledge is not as widely-based as yours. But I have studied the medicine of my own body my whole life, and I have studied pain, medications, symptoms, illnesses I suffer from, and a boat load of other information, for 15 years. I am NOT as intelligent as you are about medicine in general, but please don't dismiss my wealth of knowledge as useless just because I do not have M.D. in front of my name.
Especially in the case of rare disorders, I ask that you simply consider my requests or my viewpoints, as odd as they may seem. And you are gladly invited to consult with the specialists that deal with my case if you are ever concerned, confused, or hit a wall of frustration.
Although I am constantly terrified and in constant pain, I do my ABSOLUTE best to be cheerful and pleasant. I know that my case is particularly annoying. I KNOW that you would prefer to deal with someone more medically straightforward... I also know that you are dealing with more patients than you can handle and that my case is an added nightmare to that list.
I am grateful for you.
I am grateful that you are willing to listen and help and talk to me.
I will do whatever I can to treat you with the utmost respect, and I will make as few demands of you as I can. I never call a nurse in Emergency to ask for an extra blanket. I never tell you that the fast-track chairs are horribly uncomfortable and that I feel like I need to lie in a bed to get through the night. I never say out loud that I am not confident that I CAN get through the night. I may never admit that I am scared that this pain may actually kill me. I NEVER ask for pain medication - but I may take it if you offer. I never bother you with questions until you physically check on me. If I have to use a commode, I never press the call button for you to empty it - I wait until I see that you are not busy. I do not usually challenge you if you tell me that my family or significant other cannot come back with me. I never tell you what bloodwork I think should be done unless you ask. I do my best to be the least annoying patient I can be, because I know that just SEEING my chart makes you want to tear your hair out.
What I ask is that the next time you deal with a chronic patient who seems to look 'too good to be sick' or is 'too nice to be sick or in pain' that you consider that perhaps he/she is just trying to be pleasant enough for you to WANT to take care of him/her.
We don't want to be there any more than you want us there. We KNOW that you don't want to deal with us. We can feel it, we can see it, and I know that I have HEARD about it a few thousand times over. But we are in constant pain, constant nausea, and we are battling our own bodies 100% of the time. We only go to you when there is nothing left for us to do. And we go to you BECAUSE we trust and respect you. The only time I will ever raise my voice to you or become purposely forceful or belligerent is if I feel like I am being completely disrespected, dismissed, or as though you could not care less.
I know you have patients more immediately in need. I know that you don't want to deal with me. But I come to you when I am DESPERATE. So if I have tried several times, if I have spent MONTHS trying to get SOMEONE to listen, if I am utterly dismissed then I MAY lose my cool.
With that said, in 15 years, that has happened less than 10 times. So it would have to be under extenuating circumstances. And considering how many times I have been treated like the biggest inconvenience of the medical system, becoming agitated only 10 times is about 1/2 a percent comparatively.
Please take an extra moment.
We deserve care and respect like any other patient.
And we know - every single day - that no one actually WANTS to deal with us. Can you imagine how that feels?
And it (often) has nothing to do with who we ARE.
So a heartfelt thank you to so many nurses and doctors and ALL medical staff. I would not be here without you. Thank you to all those who care without judgement, who are overworked, underpaid, and sometimes treated like servants. I am grateful for you, even when I am in pain and may seem more demanding.
I apologize that my body and how it works is an inconvenience and can make your daily life (and mine) worse than it should be.
And I write a plea that you take an extra deep breath before dealing with a chronic pain patient. Please understand that we are not trying to make your life worse, that we are victims in this as well, and we are only here because we absolutely cannot deal with this on our own. Please do not dismiss our knowledge base or our fears/concerns as useless. We NEED your help, but we also have a wealth of knowledge about our own convoluted systems.