This post was written for the Patients for a Moment blog carnival hosted by Diana Lee at Somebody Heal Me
The topic was “Who are you without your disease? What makes you more than just your disease? How have you adapted these aspects of your life so they’re not completely overcome by your illnesses?”
To you, I am a medical record number and an attached diagnosis. You see me in lab test results, medical file notes, and medication logs. You see my signs and symptoms and what has been prescribed to treat them. What you don’t see is … ME.
Medicine is supposed to be about treating the patient not the disease, but the reality is that 15-30minutes to review how I’ve been, assess how I am now, and consider options for the future leaves little time to get to know me. So here is a little peek into who I am outside of your exam room:
… expect you to see me as more than my disease, even though I sometimes struggle with that concept myself.
… will drop you in an instant, even if it means waiting 6 months for another doctor, if I think you are condescending in any way. I am not an idiot, I know my body and I know enough about what is used to treat my ailments that I won’t stand for someone talking down to me. If you don’t listen to me, I don’t see any reason why I should have to listen to you.
… am loyal to a fault.
… am ready to forgive, but never to forget.
… but not forever. I have zero tolerance for people who take advantage of me or take me for granted. I refuse to be in one-sided friendships.
… will never be found without a book near at hand. Of course, this is stressful for my wrists, so these days you’ll probably find me with my Kindle in my hand. My disease my make my wrists hate paper copy books, but I will never let it take away my love for reading.
… would do just about anything for the people who love me.
… love to travel, but almost never get to do so.
… don’t eat meat. No matter what you have to say about it and my nutritional (or malnutritional) state.
… don’t practice any religion, and don’t take kindly to people trying to convert me to theirs. As far as I’m concerned, the Dalai Lama has said it as well as I ever could: “Kindness is my religion.”
… you will probably never know it, but I write this blog. I do so because I know that there are thousands of people out there that don’t have access to resources any more than I did. I hope that I can be a resource for them.
… won’t eat the same thing two days in a row if I can help it. When it comes to food, I definitely need variety. Across different cuisines if at all possible.
… am still afraid of the dark, and not ashamed to admit it.
… love dogs, but hate rodents and will run out shrieking at the site of a cockroach.
… manage to handle the physical pain I live with, but can’t bear to see others suffer.
… have an unreasonable collection of shoes, clothes, and makeup. Yes, I know this. No, I probably won’t stop buying them.
… work full time. Ok, this one might be in your files. What might not be is that I don’t do it simply to be in defiance of your orders. I do it because I struggled to feel like I am a contributing part of my society, and I can’t handle that feeling.
… cannot be held responsible for punching you if you tell me that something is “all in my head” or “I don’t look sick.”
… am irrevocably hurt by betrayal.
… wish that there was a support group for people my age living with lupus or other similar diseases. I know you keep telling me that I need one, but I just don’t connect with the group that does meet.
… hate when you describe the mechanism of medicines to me like I’m a two year old when you can clearly see that I’m using pharmacological terminology. I hate that. Same goes for any aspect of my illness.
… work in clinical research, so I actually talk to breast cancer patients all day. And it kills me that I can’t actually tell them how much I understand some aspects of what they’re going through.
… hate talking to on the phone to anyone other than friends and family. If I can do something by internet or letter I will.
… of course, this doesn’t really work out, because I have to spend hours on the phone arguing with my health insurance provider.
… don’t tell anyone at work anything about my illness. In fact, I don’t even tell them that I’m sick. This means hiding my medical ID bracelet.
… attended medical school, and had to drop out because of my illnesses. And you didn’t. So I will always resent you for that.
… will not trust anyone until they have proven they are worthy of trust. This includes you. You have to earn it, just being a doctor doesn’t mean I’m going to bow at your feet and accept every word you say at face value.
… believe that an excellent bedside manner absolutely matters.
… think that some of you should never have gotten into medical school, and ought to get off your high horses. You’re not better than me just because it says “MD” after your name.
… and, finally, I have the most respect for doctors who actually ask about my life outside their exam room, instead of skipping that section of the medical history.
So the next time that I walk into your clinic, please remember, that THIS is who I am.