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. 

Author: Woehrle, Michelle

Michelle Woehrle joined the MPN Research Foundation in 2007 after being inspired by their mission to fund research that will improve the lives of people living with the rare blood cancers PV, ET and MF. In 2015 she was promoted to Executive Director. She has assisted with the expansion of the grants program, grassroots initiatives to connect with more patients internationally and optimize operations for the Foundation.

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