The health journey of a chronic illness patient is full of high points and valleys. I think it's similar to what one might find on a EKG. There are so many challenges on the path that medical teams, patients, and their families must overcome. But as long as there's those high points and low points on our EKG, you're alive and you have a life to live.
Now, not all illnesses are easy to get a diagnosis for and more likely than not, at some point in your journey, your healthcare will become fragmented due to poor communication between doctors on your team and you. There will be times when you go try and find answers only to find yourself staring into a pitch black outer space with no idea where to go next. Yet, you know you have wake up every morning and face each day knowing that you are going to have to tackle your conditions head-on and do what you need to to take care of your body.
You'll play the hurry up and wait game, waiting days, weeks, and months for test results to come back, waiting for insurance to approve a new treatment or test, waiting for your medications to work, or waiting for an appointment with that specialist that is booked out for three years. Sometimes, it feels like you are watching the hand on the clock go round and round over and over again.
Add in the fact that we only have a limited supply of energy per day and that means we are forced to play a sick game of "Would You Rather?". Now this "game" is going to look different for different people, but some of my daily decisions include: Would you rather eat or take a shower? Do homework or sort your pills for the week? Put on make up or pull up hair? Have three doctor's appointments in one day and have two days to recover or have one doctor's appointment per day and no time to recover? Take breakthrough medication and make stomach problems worse or deal with and not further anger my stomach? The possibilities are endless.
The chronic illness patient is forced to make critical decisions each day, but not feeling well makes logic and reasoning harder. Add in all the emotions bottled up inside and decision-making is challenging. It's really easy for others to forget how much we have on our plate, just with our health when we go through life acting like nothing is wrong. In addition, we can't forget the misdiagnoses of a psychological condition or labels of "attention seeking" when in fact, there are legitimate medical conditions to explain the symptoms.
The road to diagnosis is a long trek on a steep rocky path. We fight for an accurate diagnosis, which we hope will bring a treatment or even a cure. Unfortunately, sometimes just getting the diagnosis is a challenge, but you might as well not even know what's wrong with you because you can't get treated effectively.
These are just some of the harsh realities of pursuing a diagnosis and trying to hold it all together. It's tedious, but that is just a part of the roller coaster we know as life.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!