This was inspired by the article “Open Letter to Normals”.
These are the things I would like for you to understand before you see me…
Please understand that being sick doesn’t mean that I am not still a human being. You may need to poke and prod on me, take my blood, and submit me to radiation, but please realize that I am a PERSON with FEELINGS. Please discuss all tests, diagnosis, and treatments WITH ME instead of just TELLING ME what’s going to happen.
Most of the patients you see may have a cold or the flu, but I have been sick FOR YEARS. I am not your typical patient, I am a patient with a CHRONIC ILLNESS. You will probably see me more often than your typical patient, but that does not give you the right to say “so, you’re back…AGAIN”. This does not make me a hypochondriac. Between my body working against me and the side effects from medications working against me, I am under constant attack – and I will need your help to get through it. Do not just assume I am here because I want to be, or to torture you. I am the one being tortured.
I am unlike most patients. I KNOW MY BODY. I have had plenty of time to get to know all of its quirks. When I tell you that something is wrong, then SOMETHING IS WRONG. Do not assume to know how I feel. LISTEN TO ME and I will tell you. Sometimes, I will even be able to recognize what’s wrong. Don’t dismiss what I tell you because you think that it is impossible for me to know. Listen to the symptoms, do your tests, and you just might see that I am right. Why? BECAUSE I KNOW MY BODY.
Yes, I may have specialists. However, it it your job as my PRIMARY CARE PROVIDER to be my PRIMARY doctor and the link between myself and my specialists. If you are so busy with your cold and flu patients that every time I come to see you, you waste my time by sending me to my specialist, then I can and will find another doctor who is not too busy to make me a priority. For example, I should not have to call four different offices to get medication refills when I can call you and you can refill them all for me. However, know when enough is enough. If you are stumped as far as what to do next with my care, then we can discuss my going to a specialist.
Again, I am not your ordinary patient. I do my homework. It’s even possible that I know more about my condition than you do. So do not try to sugar-coat the facts. I AM A BIG GIRL (or boy) and I prefer you speak openly and honestly with me about what is going on. If you don’t know, then SAY YOU DON’T KNOW. I will only respect you more for your honestly and then we can work TOGETHER on what to do next. This might be a good time to send me to the above mentioned specialist.
Trust me, I understand that dealing with a patient with a chronic illness is no day in the park. But with honestly, respect, and integrity, we can work together to facilitate my healthcare for both of us.
What do you think about this open letter? Are there any changes you would make? Would you show a copy of this letter to your General Practitioner the next time you go, or when going to see a new one?