Written on May 26, 2010 by Daniel P. Malito
First off, let me apologize for being somewhat missing in action lately. I have been in and out of the hospital for almost a month now with a pneumonia type infection. This resulted in a secondary infection which was obtained during the first hospital visit. And so on. I will save the details of the month-long ordeal for a longer, more detailed piece, as there is so much I want to relate. Anyone who is in danger of spending time in a hospital will want to read about what me and my family have learned during this escapade. Hospitals are no longer a place for the sick to go to convalesce. They are just like any-other customer-service based business. Gone are the days where you simply said “yes, doctor,” and let the “team” perform any procedures they request. Today you have to fight for yourself and your body, and you have to strive to make the doctors listen to you. Listen to you, and actually hear you when you tell them “I know my body, and this is not right.”
Without getting into the full detail of my recent hospitalization in this article, I want to tell you about a general principle that I have followed over the years that has served me well always — not only during the most recent crisis. In fact, this lesson may be the single most important (non-clinical) activity that I have engaged in over the years that has helped with my disease.
Know thyself. Those two simple words have saved me so much pain over the years, if I could bottle them up I’d sell them as a wonder drug.
The word of the doctor is still just a very educated guess. Doctors are not infallible, nor is medical science. If something isn’t right or you do not feel comfortable – speak up!
In order to help yourself as much as possible, it stands to reason that you would want to read, watch, and absorb as much information as possible about your illness or condition, right? Well, anyone who is sick all the time can tell you that this is much easier said than done. Even for those of us who have remission periods, the last thing we want to do when well is read about being sick. So, like many of you, for a long time I suffered from the ostrich syndrome. Head in the sand, you get the idea. I was young enough to get away with this since my mother picked up the slack and devoured every bit of information she could. Thankfully, though, I realized the value, and she passed the torch to me.
Today, I would never think about handing my body over to someone else for a procedure or test without having at least a basic understanding of what is about to transpire. Even if this means something as simple as asking the doctor to explain it to you twice so that you fully understand what is about to be done to you. It is your right to know, and it is also your right to question that procedure if you do not feel comfortable. The word of the doctor is still just a very educated guess. Doctors are not infallible, nor is medical science. If something isn’t right or you do not feel comfortable – speak up! Of course, in order to be able to challenge the word of the doctor, you will want to make sure to keep yourself well educated. Even so, no good doctor should have a problem with a patient who asks as many questions as they can – especially when the questions are well-formed and factual. Also, if you are going into the hospital and know ahead of time, spend an hour on the internet and read about what procedures you may undergo. If you find yourself in an ER, then make sure to ask as many questions as you can. That’s what the doctors are there for. Don’t worry, if they need to jump and save your life, they will without hesitation, I promise. You can go right back to asking them questions after they stabilize you.
The other half of knowing yourself is trust. You have to trust in yourself and your body. You have lived with that bag of organs and bones wrapped around you for quite some time. If something is happening to you, your body will let you know that things are amiss. At that point, you need to be able to trust in yourself enough to say “hey, wait a second!” Now I know how hard this is, especially when you are on your third trip to the ER at 4am on a Monday morning while sitting on a gurney with six doctors standing around you. At that point, it gets a bit tough to stick to your guns because you “think” your body is telling you that you are not fully cured yet. It can be extremely intimidating and embarrassing, but just keep telling yourself “I know my body, this isn’t right.” Playing it down is not the answer, I can promise you that, and it may even be dangerous. Besides, doctors usually have more than one way to fix a problem, so if it isn’t for you, tell them! If this last trip to the hospital has reinforced anything, it is the fact that you must be confident enough in yourself to say, out loud, “something is wrong, my body should not be doing this.” — no matter what doctors or nurses are telling you. The worst thing that can happen is you get an extra set of tests run or you find out it was just indigestion, and everyone has a good laugh. The alternative – not speaking up – can lead to much worse outcomes.
Those of us who suffer chronic pain regularly know these lessons well (even if we do not heed them all the time). Those who, sadly, have just begun their own ordeal, please take these examples to heart. Read all that you can, ask as many questions as you want, and never let anyone tell you “just because,” or to “stop asking so many questions.” You wouldn’t let someone take your car and tinker around inside it without telling you what they were doing, so why would you let them do it to your body?