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How I Explained My Chronic Pain to My High School Peers

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The other day, I was sitting in my psychology class, listening to a lecture on sensation. My teacher was discussing touch and pain, as well as coping mechanisms for people suffering from chronic pain disorders. She then posed a question to the class: can you remember how you felt in the moment of your life where you felt the most intense physical pain?

I thought to myself, for me, that wouldn’t be one moment. For me, it can last weeks at a time. And then I realized that, most likely, the other students in my class really don’t know what invisible illness looks like or feels like. So I raised my hand, and I shared with them the things that I think are important for people to understand about chronic illness. Here’s what I told them:

1. Invisible illnesses are real. Just because you can’t see it doesn’t mean you can question it.

I’m very open about my medical issues, but I rarely tell people exactly what I feel on a day-to-day basis. That being said, if people show the courage it takes to express what they are going through, don’t make them regret it. Invisible illnesses carry a heavy emotional component since many of us automatically default to the “no one understands what I’m going through” mindset. Be sympathetic and willing to learn and listen. I will never expect another person to understand what I feel, but I do expect respect.

2. There are millions of people who experience chronic illness, but no one feels it the same.

It is amazing to be in a classroom where we are having an open discussion about chronic pain. But this list of treatments for pain management (acupuncture, massage, electrical stimulation, etc.) does not solve our community’s problems. Acupuncture might bring one person to a state with almost no pain, while for another person, it could intensely aggravate their symptoms. Just like there will never be a person exactly like you, there are no two people who experience chronic pain, or any other illness, in exactly the same way. “One size fits all” does not exist here.

3. Am I too young for this? Yes and no.

From the bottom of my heart, I often feel that I am way too young to know that I will face this long list of symptoms for most of my adult life. I often feel like I was cheated out of my adolescence and my high school experience. But regardless of how I feel, the reality is that there are millions of teens just like me who live with chronic pain, in addition to dozens of other chronic illnesses. You might not know them, but believe me, they’re out there. Take a second to imagine how different your life would be if you were within these millions. Maybe that’ll help you feel for a second how so many others do everyday.

4. Just because I am so open about my illnesses doesn’t mean there isn’t more to me.

I feel a responsibility to show people that, while I am a teenager who has a chronic illness, you wouldn’t know I was sick unless I told you. Yes, I am extremely open about my experiences with chronic illness. But do not mistake this for insecurity or selfishness. There is so much more to me than my illnesses, and part of that is my wish to open this conversation. I never want to be labeled by my medical history, but it is a part of my identity. A part I do not want to ignore, but a part I also do not want to dwell on. I have a whole life ahead of me that I am planning with chronic illness being only background noise.

5. I would be thrilled to talk to you about chronic illness any time.

In my lifetime, I would be honored to see more people, especially young people, educated about chronic and invisible illness. Please ask me questions. Allow me to help you understand. I want to eliminate the stigma that surrounds chronic illness and talking about chronic illness. If you want to learn, I am here with open arms.

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Originally published: February 14, 2017
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