- Personal Health Information & Self-Help
Advocating For Yourself
I remember my first ER visit followed by an impatient stay like it was yesterday. I was thirteen years old, and I had been seeing blood fill up the toilet every time I had a bowl movement for months. I also had piercing stomach pain. To give you an idea of how bad it was, on the doctors fancy 1-10 rating scale, I'd put it at about an 8. I let this progress for months because I was sure that I was dying. I didn't want to tell my parents to save them from the misery. The problem continued to worsen until one day, I got a fever of 103 that wouldn't let up. After 4 days I found myself in the ER.
I remember being poked, prodded, asked to drink two disgusting cups of a goo like drink, scanned, and it feeling like it lasted an eternity! They ruled out my appendix, but discovered on the CT scan, that there was inflammation in my small and large intestine.
I was told further testing was needed and I'd be admitted for the night. I was so terrified. I hardly slept. When I had just fallen asleep, a nice old man came in and introduces himself as the pediatric gastroenterologist. I didn't know what he was talking about, but the next words out of his mouth were: "please scoot to the end of the bed and pull your pants down, I need to do a rectal exam." If i didn't already feel like I was dying, I now felt like I was going to die.
I didn't realize it at this horrific moment, but I would grow incredibly fond of being a "pediatric patient". Every time I was admitted to the hospital, the love and care I received from the staff was so nurturing. I always knew that those caring for me had my best interest in mind. I formed relationships with the nurses on the peds floor, loved visiting the craft room and would chat with the lady in charge of recreational activities for patients, and most of all, I always felt safe.
This past weekend I was brought in by ambulance, and after much confusion in the ER because my doctor wasn't the one who was on call, I was admitted to the adult floor. From the moment I climbed into the bed and started to get hooked up by the nurse, I wasn't a fan of the atmosphere whatsoever. My first problem was instead of hearing babies crying, I heard adults yelling everywhere at the top of their lungs. My second problem was that every staff member (doctor, nurse...) who came in the room treated me as if I had done something wrong. Instead of genuinely caring for me without question, I had to prove over and over again that I actually needed their help.
The doctor that was on call for my neurologist (I also have epilepsy....later story) came in the morning after my seizure, met me, and after getting a brief history on me, began asking me questions like: "do you struggle with depression?", "do you ever hallucinate?", "what in your life is going on that could make you feel depressed?", "Where do you find your value if you don't work and don't go to school...?". The longer the questions went on, the more I realized there was already a preconceived notion about me that she had formed before walking in my room. I kindly stopped her in the middle of her questions and asked her how much she had read on my chart. She didn't know much about my history, so I gave her a short overview and kindly told her that someones illness doesn't define them or put them in a "box". Just because this is what I'm walking through right now, doesn't mean I also have the "typical" problems that most other epileptics may have as well. I told her that I find my strength in the Lord and although some of those problems used to be an issue for me, I've overcome them through the cross. I then kindly asked her to leave.
I then found myself dealing with a simpler situation the following morning. A fourth year medical student came in from internal medicine and let me know they were in charge of my case (not neurology). I began to ask questions and it became apparent to me that the team had no idea what was happening with me. I was alone, super medicated, and I wanted to cry. BUT I knew that I needed to assert myself and let them know what works for me, what doesn't, and that "I think", and "I don't know" really do not fly with me.
Something that has always been essential since I was diagnosed with crohn's disease is being my own advocate. My doctors may be the smartest on the planet, but if I don't know what is best for me, I am the one that suffers. This doesn't change when you transition from being a peds patient to being an adult patient. It just stretches you more. Especially when you look like you are 12 ;) I was speaking to residents my own age this past weekend, and telling them what actually was best for me - speaking this is love - but speaking it.
If there is one piece of advice I could give to someone dealing with a health condition, it is know yourself and fight for yourself! The rewards you'll see when you do this are endless. It is OKAY to ask questions, say no, request a second opinion, etc... It is your life at risk. This is something that we need to start doing at a young age so this transition into being an adult patient isn't so tough. I have story after story that I'll share in later posts of how this changed me. For now, keep pressing on! You aren't alone warrior!