Over the last few I have been ask so many times what I have learned from my illness. Or what my illness has taught me about the healthcare system. At first nothing really came to mind. But the longer I have had to deal with chronic illnesses, the more doctors I have seen, and the more insurance companies I have to fight, the more I’ve learned about dealing with illness that my education or years work experience NEVER taught me. You may be thinking, How is that even possible, you went to through 4 years of nursing school and working in the healthcare field for over ten years, how would being chronically ill teach you anything that you didn’t already know? Well that is easy. All the years I was in nursing school or the years I worked in healthcare, I wasn’t the patient. I was the caregiver. I didn’t truly understand what the patients had to deal with just to get the treatments they needed. I will just be completely honest, you have no idea as a healthcare provider what it is like to be on the other side of that bed until you have been on that side yourself!! So let’s just jump right in.

1. The Real Meaning of a Chronic Illness

One of the BIGGEST things I have learned from my illness seems silly, but I want to be honest. I have learned the true meaning of a chronic illness. When I took care of patients in the hospital who had a chronic illness it NEVER really hit me just what that meant. I never realized exactly what “chronic” meant and just how much of my patients’ lives were impacted by their chronic disease.

2. Sympathy and Empathy

These are entirely different ideas. It is very different sympathizing than it is to try to understand where someone is coming from. Now that I can empathize as both a patient and as a nurse it has changed my outlook as well as how I interact with patients and their families. I learned how and why chronic illness patients seem more guarded and at times more fearful than your average patient.

3. Use of Medical Jargon

While I was working as a nurse I never realized just how often medical professionals use medical jargon. Most likely because I was using it too. Luckily I understand most of it as a patient. But when I am having one of my bad migraines it is often hard for me to really understand much of anything. It was those days that made me so much more aware of just how often medical terminology rather than lay terms is used to explain things to patients and families.

4. Honoring Time

When you’ve asked for pain medication and the nurse says “I’ll be right back,” or “I’ll be in at 5pm” but they don’t come back for 30 minutes or until 5:15, those minutes feel like hours. As a nurse I always tried to get right back or to go when I said I would. But I never truly understood just how long those 10 or 15 minutes I was gone really felt. When you are hurting or feeling sick to your stomach those 15 minutes may feel like 4 hours!

5. The Cost of Procedures, Treatments, Treatment Centers & Medications

I’ll be 100% honest and say that when I was working ICU Step Down I was not aware of the cost of probably 95% of the medications and treatment modalities we used for our patients. It wasn’t because I didn’t care, it was simply because I had to know so many other things that this information would take a back seat. On the other side as a patient I am much more aware of what medications, CT scans, and MRI’s cost and what my out-of-pocket will be. Simply because I have to pay for it. I feel like there is a breakdown between providers and patients on this topic. The providers want the best treatment no matter the cost. But the patient would usually prefer the best treatment for the cost. Learning this as a patient definitely changed things I did in my practice…because I knew what it was like to hear that your new medication was going to cost $25,000.

Needless to say, I have learned so much from being a patient with a chronic illness. I feel like that in some strange way it actually made me a better medical provider. As you can imagine, after working in the medical field for many years, I have many friends who remain in that field. And due to the things I have experienced with my chronic illness they have been able to learn and improve the way they practice and treat those they care for who are situations similar to my own. I will always stand by my feelings that every medical provider should have to be a patient for at least a short period so they can experience things from the other side of the bed. So they can have the full patient experience. Their views on the way they treat patients would be forever changed like mine.

Chronic illness has given me a view into a world in which felt fully enveloped, but which I had never fully seen. And for that I will always be grateful.

Amber Blackburn
Amber graduated with her Associates of Science in Nursing in 2007 and her Bachelors Degree in Nursing in 2011. In July 2012 she was finally diagnosed with Systemic Lupus. Since that time she has also been diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and Debilitating Migraines. She feels very fulfilled in the work she is currently doing and can’t wait to see what will happen in the future. Find more of her writing at TheWorldSeesNormal.com
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