My talk for medical conferences:
So, I’m serious when I say I want to educate our beautifully educated doctors… Listen I love my doctors… I’m a hugger! Every time I get a shot, my gorgeous female allergist and I hug it out…Harvard hugs me, it is usually when he is crazy worried and he puts me on prednisone AGAIN, and I remind him that I don’t love him right now….
But I will hug anyone. I’m a super hugger, I’m a lover and I feel fairly Irish, listen I love to laugh, love a good story, and love, love, love people. I’m an extra, extrovert. If you want to learn someone’s life story, call me! People love to tell me their tales. Everyone has a story, and often your assumptions are wrong. Some people who don’t know my case think I’m dramatic because I have this beautiful coping mechanism, I shut down with a smile on my face and a facade and play it off… Harvard has had many a call from doctors who think I was faking, because as soon as I smell you don’t get it I’m done. ALL DONE. I put on a smile and cover up my wounds and roll out on you. So from your perspective it looks like I’m dramatic, or faking… but screw- you… I’m not going to bear my soul to you if you don’t want to care. I think when you have been in the trenches for a while, patterns emerge, and patients sometimes seem familiar. But I beg you to be on the lookout for the zebra in your mist… You are missing us.
I also realize that I am unique, I can be scrappy, I’m tireless when I get a bone, and I have assembled a team, I mean a TEAM, I have worked hard to make sure that I’m surrounded by folks who get it… Having a chronic disease is very difficult, it is very hard to explain, and people don’t get it, sometimes folks look so healthy and on the inside they are a disaster…I’m in charge, and when I can’t, Jeff and Harvard call the shots…. Harvard for the longest time only called me Mrs. Ferguson, and one day I was resisting his request to go to the hospital…and he looked at me and said,” Kathryn, this is not a request”… So I went, I do listen… despite what Harvard and Clive Owen (aka Jeffrey think… )
So back to my talk to the Doctors who may not get it:
1. It takes courage to go to the doctors. No matter who you are; or what station you are in , it takes courage to walk into a medical office. No one goes just because they don’t feel good.
2. Also, while depression and anxiety go hand in hand… some folks are sick and tired of being sick and tired….so just keep that in mind…
3. When you have a chronic disease you find tricks, or work a rounds, that information can be critical in deciphering our case.
4. It is unbelievably painful to give your medical history or you story over and over to folks, it is telling your worst story /tragedy over and over again, and then waiting to see if your doctor’s light go off that they get it…That is stupid painful…. from Hopkins, to NIH, to where ever is next… The paramedic who finds you on the floor….
5. Going to the ER…. ALWAYS sucks… it never gets better, it’s always noisy, cold and scary…
6. Try to respect me, I’m the expert on my body, and when you are a zebra, you know more about your conditions than most doctors.
7. Just because I’m polite, charming, and funny doesn't mean, I’m faking it. It just means that the Sisters of Mercy beat respecting authority into me!
8. I know you are already have patience, but try to just love your patients, imagine GOD forbid we are your girlfriend, Mom, wife, little sister… because we are someone’s, very precious someone, and if you damage us, one of you colleagues has to put us back together…
9. Please be kind to the nurse, orderlies, and techs who care for us, they are most often the best of the best and you miss them every day…
10. AND Just cause you are often the smartest person in the room doesn't mean you need to act like one!!!! Hello everyone thinks you’re an asshole when you do!
11. And when you show us some kindness, comfort, compassion… it doesn't mean your weak it means you are human just like us…
A little bed side manner, goes a LOOOOONG way. Work on it Docs!