You never stop being a patient even after being discharged from the hospital. There are post-op appointments, specialists to see, and therapy sessions. Patient by Websters dictionary is defined as:

‘A person under medical or surgical treatment; – correlative to physician or nurse. Like a physician, . . seeing his patient in a pestilent fever. In-patient who receives lodging and food, as treatment, in a hospital or an infirmary. Out-patient one who received advice and medicine, or treatment from an infirmary.’

When I hear patient, I think of the homonym meaning of the term:

‘Able to remain calm and not become annoyed when waiting for a long time or when dealing with problems or difficult people.’

Learning patience is something that is a valuable tool. It is something that you have to learn when you are in the hospital and something that I was not very good at. You have to learn how to be patient waiting for your test results, learning your diagnosis, and ultimately waiting to regain your body and mind back. Accepting this has happened to you is a big waiting game too. This takes a while to wrap your mind around as well. Everything is a waiting game.

Learning how to be patient, particularly if you don’t know when or if you will ever enjoy some things in your life again is very difficult. I guess it is the uncertainty and constantly watching the clock’s hands slowly moving one tick at a time passed each other until someone comes into your room to inform you of the good, the bad or the ugly.

If you didn’t have patience before, this is an even more difficult task. The frustrating and emotional discovery of your body fighting against itself is unusual and unfamiliar. You have to begin to learn to accept help and push pride aside. Patiently wait four weeks for a little flick of your index finger to move 2cm to show progress in your recovery.

When doctors came in with their team of residents, junior residents, and attendings they would immediately begin with ‘this patient shows signs of’ or ‘the patient displays increasing…’ I assume to disconnect the emotional attachment from the actual disease being associated with them. It is easier to treat someone that you are not connected with emotionally, easier to fix something, poke and prod, explore all avenues with no affiliations than someone with you have a personal connection with. This is not all physicians by any means, I do not want this to come across like that at all, but at times when you are waiting to hear important information that is life changing, the presentation of your chart, name included is meaningful to you.

After being a said patient for months now, I have decided to remove this title or more-less change it. Having now recently relapsed and am going through the process of seeing specialists once again to narrow down what is actually happening to me, the patient does not fit. When you are a patient you are in reality doing more than waiting. You are managing medications, researching your symptoms, advocating for your own health. So now instead of the title ‘patient’, waiting for answers and someone who so formally stays in a hospital for seeking medical attention I think that ‘adventurers in the healthcare systems’ is more accurate than ‘patient’. I chose ‘adventurer’ because you are an explorer of the medical world, seeking the truth about your diagnosis, asking questions, looking at the unknown and finding something that might not be there. You have to maneuver through obstacles and learn how to overcome challenges dealing with multiple systems. It is often times a rollercoaster of emotions that leads you from doctor to doctor, tests (that aren’t always the easiest to endure) and finding answers. Some people go on an adventure to find answers in their life inevitably changing their perspective and bettering themselves, others seek fulfillment. This adventure is by nature life changing, testing your strength and emotional capacity and fortitude.

In all of this you are the one that needs to be an advocate for your health to all of the healthcare systems including CCAC, the hospital, pharmacy, and everywhere in between. If anything that I have and currently am learning during this process of finding out what is wrong with me, is that you have to ask questions and keep asking questions until you find the right answers. You are the one that is the guide of your health and the one that is the leader of your adventure. After having a recent setback in my health, I have learned that if you don’t hold the reigns and control your own adventure then you will not carve the path that you want.