Be a partner in your health team

Guest post by Emily, ET 

Emily in 2011

At 18 I was a typical college freshman. Happily and healthily being the semi-irresponsible person I was supposed to be at that stage of my life. That spring I started getting lots of headaches and had HUGE bruises on my forearms. I went to my GP and after a brief side-trip to misdiagnosis-land, it was determined that I should see a specialist. I started seeing a hem/onc, and after a quick and painful bone marrow biopsy, and not so quick, almost as painful waiting, found out that I have essential thrombocythemia (ET). Big long words with no meaning. A quick trip to Google later and I was slightly more well-informed. Being 18, I didn’t take it terribly seriously, and didn’t want to feel labeled. So, what’s the logical thing to do? Ignore it and it'll go away. Kind of like “if I can’t see you, you can’t see me”, the typical three-year-old’s hide-and-seek theory, applied to medicine. Unfortunately that doesn't actually work.

I was first prescribed Anagrelide, and was on anywhere from 0.5mg/day to 7.0mg/day. I had lots of side effects with this it, headaches, heart palpitations, dizziness etc. If it could be found on the label as a possible side effect, I probably had it. I am lucky to be in the 50% that cannot tolerate it. So in addition to not wanting to recognize this issue in the first place, I was able to almost get away with not taking my meds by emphasizing how bad the side effects were.

After a while of not taking my meds on time, or sometimes even not at all, and having LOTS of complications, I came to realize that I was being pretty silly. Shortly there-after I got a new doctor who was more familiar with ET patients, got a new prescription and started taking my meds…almost regularly even!

I still had complications from time to time, resulting in pheresis, and dosage increases in my meds, but instead of being apathetic, and letting “whatever happens happen”, I became an active patient. Managing my health is not only the responsibility of my doctors, it is mine as well, and I became to accept that I could be a partner in my own health, rather than a passive victim of my condition.

I am now extremely involved in my treatment to the point where my doctors probably dread seeing me and my now-infamous binder. The binder goes with me to all of my doctor’s appointments - Hem/Onc, GP - doesn’t matter. The binder goes with. It has every piece of my medical info I can get my hands on plus questions I may have, plus articles I’ve run across that I want my doctor to look at, etc. I have accepted that this is part of my life. I have setbacks occasionally, but mostly I just roll with it.

When this started I was so afraid that I'd be labeled as "the sick girl", that I made myself sicker. It took me a while to figure it out...but I finally realized that these diseases are only a small part of us. They do not define us as people. What defines us is how we handle the setbacks that may come along with it.