I am a person.
I know it's shocking to some of you, but it's true.
I was even one of you, before illness came knocking at my door.
I am not a body part.
I am not a set of test results.
I am not patient number five for the day.
I am a living breathing human being.
I have a life.
I have hopes and dreams.
I have fears.
I have a family who are equally affected by my illness.
I cannot turn it off.
I must live with the impact of illness every hour of every day.
When I step out of your office my life continues.
My piss poor health continues.
I cannot detach.
No matter how much I may wish it otherwise.
I am an informed patient.
This is my body and my life.
I am invested in finding a solution.
I am invested in understanding my body and why it is breaking.
This doesn't mean I don't value your opinion. That's why I'm here after all.
My knowledge and investment are not a threat.
They are a tool you can use.
If you are open.
I am not two and you do not need to speak to me like I am incapable of understanding what you are saying.
If it is complex, take the time to explain it in lay language. Use pictures, or at the very least give me a handout.
I know that some patients are complete douche bags. Being sick doesn't instantly make you Mother Teresa.
But don't treat all patients as if they are the enemy.
Douche bags, although difficult and memorable, are a minority not the majority.
I understand that you need a certain level of detachment or the sheer weight of human misery you see each day would crush you.
But please look me in the eye.
Please listen to what I say.
I came to you with hope.
I came to you with the knowledge that you are an expert in your field.
I came to you to help me.
I will respect you more if you treat me like a person.
I will be more compliant if you treat me like a person.
Say you don't know.
Refer me on.
Such honesty makes it highly likely that I will trust you.
Such honesty makes it highly likely I will come back to you again.
I don't want platitudes.
I don't want disdain or sarcasm.
I don't want to feel like I am an inconvenience.
That I need to be rushed out your door.
Show me that I have value.
That my health is important to you.
See me the person, and I will see you as a person too.
Respect is a two way street.
I want this to work.
I want to feel better.
Together we can do this.
Michelle the person, who just happens to also be a patient.
Like like like, true true true x 100000!!!!ReplyDelete
You always have such a beautiful way or articulating the exact problems most face while battling through the woes of chronic, invisible illness.
Love it!! Now, how to effectively distribute the message to doctors across the globe... :-)
Thanks Anon xx I do have a lot of good docs and allied health professionals on my team now (only took 6yrs!). But every now and then I come across one that makes me go WTH?Delete
Beautifully written, I have no probs with my doc [his wife is in the same boat ] so am sooo lucky, but do wish "IT" would end..ReplyDelete
Thanks Virginia xx I do think that having a family member with a disorder helps tremendously. The now retired top specialist here in Oz had a daughter with POTS and he was brilliant. From the moment I walked in he understood just how hard it all was.Delete
I had tears threatening to spill over before I'd even neared the end of this superb piece. As someone with enough (personal) medical horror stores and tales of less-than-stellar (to put it very nicely) doctors to induce hellish nightmares in even the toughest of souls, I can't help feeling like a copy of this letter should be sent to every doctor, nurse, surgeon, and other medical professional in the world. STAT!ReplyDelete
I'm so sorry that you've had such horrible experiences Jessica. Sadly it seems only too common. There are some great health professionals around but there are so many that seem to have lost sight of the fact we are still people and need to be treated as such. A moments compassion can make such a difference in those difficult moments.Delete
I totally understand this... not having a chronic illness I don't live it everyday like you. But I have had a taste of it many times and Do. Not. Want.
No one should have to deal with it, whether it's a one off issue or chronic one. Being ill or injured can be a scary stressful place. A kind word or a sense that a doctor, nurse, allied health etc actually cares makes such a huge difference.Delete
Oh YES! I recently wrote a letter to my doctor, with attached research and the apologyReplyDelete
"I am sorry, I do not wish to be difficult patient.
The thing is, I do not wish to be a patient AT ALL"
Thankfully, he heard me and phoned me straight away. Amazing what can happen when the stars align/you hold your mouth the right way/ the wind is coming from the correct direction/ your doctor is a LISTENER!
Beautiful open letter Rusty.
So glad your doctor is one of the good ones. Rach. :)Delete
Beautiful! Beautiful! Beautiful! Is all I can say. I am copying this down and sending this to several physicans that NEED to see this. I hope you do not mind. Thank you for putting down in words what I think all the time after one disappointment after another for years now. Except now I have a Neuro with a team that do listen, that do understand and that do care and are trying hard to help me out here.ReplyDelete
Go for it Terri Lynn. I'm glad you have a good team now, I lucky like that too, but it took a long time to get there. xxDelete