Amber’s Lupus Journey

A medical ID is recommended to anyone living with a medical condition. In an emergency, it can easily and effectively communicate a chronic disease, such as Lupus, to first responders.

I knew little about systemic lupus erythematosus (lupus) until I was confronted with my diagnosis in 2012 at the age of 26. For years, I had health issues that doctors were unable to diagnose. I had less energy than others my age, and I often preferred to sleep rather than participate in fun activities. I was also sick more frequently than average. As a nurse, I simply blamed my busy schedule and the fact I was caring for sick people daily.

In February 2012, I contracted a respiratory infection, and this time, it felt different. Coughing constantly and struggling to breath, I was admitted to the hospital for five days. Sadly, when they sent me home, I still didn’t have answers, nor did my symptoms improve. My pulmonologist later did more testing and, much to our surprise, my results had changed. I was referred to a rheumatologist, who diagnosed me with lupus.

I was not overjoyed to be diagnosed with a chronic disease, but it was a relief to have an answer. In the coming months and years, I tried numerous treatments that resulted in little success. It became difficult to work, and I was forced to “retire” to manage my condition. This was one of the most difficult decisions of my life, but I needed to focus my energy on improving my health.

What being chronically ill has taught me

 

You might wonder: What could living with lupus teach you? Truth be told, I have learned and grown so much. One thing that stands out is the lack of understanding people have for invisible conditions. If you don’t look sick or use a walker or wheelchair, people don’t believe you’re sick.

It can be difficult to maintain friendships when you’re chronically ill. Most people won’t understand or tolerate when plans are constantly cancelled. It’s easy for them to assume I’m blowing them off – when in reality I would give anything to be spontaneous or go out to dinner and a movie without worrying how long it will take to recover. I would give anything to live a “normal” existence.

Yet, there truly are good things that have come from my diagnosis. I learned at the beginning that we all need support, and I have made lifelong friends along the way. Living with a condition that impacts every facet of your life is overwhelming, and it’s nice to have someone to talk to who understands the struggles that accompany chronic illness.

With the help of some close friends who battle lupus, we launched our own group on Facebook called Lupie Groupies that has grown to over 600 people. It’s truly become a second family. I also started a blog focused on lupus and living with chronic conditions. It gives me the ability to teach and share my experiences with others.

My dream was to become an educator and teach in a nursing school. After I became sick, I put my dream on hold. Forming the group and the blog have been a huge blessing, giving me back something I lost after leaving my nursing career. I feel useful.

Living with lupus, or any chronic illness, is not easy. There are peaks that are challenging and valleys where it’s status quo. You can make one of two decisions when you get a diagnosis like this: You can choose to fight for access to the best treatments, fight for better doctors and fight for the care you deserve, or you can just sit down and take it.

Long ago I decided to fight, spread awareness and make sure others don’t feel alone. This fight is bigger than me.

 

About the author:

Amber Blackburn

Amber was diagnosed with Systemic Lupus Erythematosus in 2012. She worked as a Registered Nurse for 10 years until her health no longer allowed her to work outside the home. Since that time (2017) she has been sharing her journey on The World Sees Normal (theworldseesnormal.com) and feels like she is able to bring a different perspective on chronic illness due to her background.

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