You probably think chronic pain is something the outside world can notice, like shingles or cerebral palsy. It was not until I began to experience reproductive pain related to endometriosis. However, I did not always experience life with chronic pain. I was just as ignorant of the reality of invisible illnesses. I did not grasp the idea that someone could look perfectly normal yet might not be able to function in day-to-day life. So, I ask you; how would you feel if you became the one with an invisible illness? 

Personally, it was scary to become one of the 190 million women across the world who suffer with endometriosis. It was not until I experienced chronic pain that I realized the stigma that surrounds chronic pain. While most people show sympathy for those who are in wheelchairs or have visible scars, those with invisible illnesses are not given the same treatment. Understanding the stigma around invisible chronic illnesses gives sufferers the reassurance they so desperately yearn for. Most people do not understand the self-deprecation that comes with chronic pain. When you look in the mirror, you experience a version of body dysmorphia, except you know that the pain is there, you just cannot see it. The constant degrading yourself for taking a day off to deal with your health is exhausting, especially when one day turns into three days and three days turns into a year.

Looking in the Mirror with Chronic Pain

However, the micro-aggressive advice and “pep-talks” that come from others is the worst part. 

“Maybe cut gluten out of your diet?” 

“You’re probably just stressed.” 

“At least it is not cancer. It could always be worse.” 

“Try to work out.” 

And the worst of all… 

ANY KIND OF MEDICAL ADVICE! 

I have never understood people trying to give others unwarranted medical advice. I have seen some of the most advanced surgeons and specialists in the world, I do not want medical advice from some anti-vaxxer mother (I am looking at you, my junior year journalism teacher).  

One thing I do relate to is saying the horrible five words that everyone with chronic pain dreads to hear, “It could always be worse.” Looking back, I cringe at the thought that I could ever say those words to someone. During my recovery after excision surgery, I went through I deep self-reflection. My recovery mentally was not linear. It took self-evaluation during my recovery period to understand the purpose of being chronically ill. As I was getting better, I still feared for my future. Living with the idea that I will always have endometriosis took a toll on my mental health. There were too many times that I was disregarded, unheard, and swept under the rug. I was a young woman in pain who felt betrayed by her doctors and the system.  

Physical/Psychological Cycle of Chronic Pain

The best advice I can give anyone who has someone in their life with a chronic illness is to educate yourself. Ask the hard questions and develop a better understanding of how to help them. Validate the people in your life, it may be just what they need.