Don’t Judge a Book by It’s Cover

 
 

I hate the faces on a pain scale.

As a kid, I could never relate to these pain scales. It told me if I was at an 8, I should be crying. Well… I was at an 8, and I was not crying. In fact, other than the inability to walk, I probably looked like a 3 :) on the pain scale.

This reigns true for me even more today. Over the years, I have gained a high pain tolerance and the ability to conceal the feelings stemming from my pain. When you experience pain on a daily basis, you can’t cry every time you hurt, otherwise you would be living in a pool of tears.

Talk about “don’t judge a book by its cover.” I feel like a prime example of this saying. When most people look at me from the outside, all they see is a never-ending smile. But when you look inside, you see all the pain I experience. When I was at the Cleveland Clinic, I took an art class for therapy. The assignment was to paint the outside and inside of a mask to represent how you were feeling. On the outside, I covered my mask with pink, purple, and a whole lot of glitter. That’s how people perceived me… happy, outgoing, and most of all sassy. However, on the inside, I painted my mask blue to represent my sadness and depression along with red to signify the pain that was consuming me from the inside out. Obviously, no one can see how I am feeling on the inside which leads people to believe that I am fine.

I am sure many of you can relate. All of us have the ability to put a smile on our faces even when we are going through something hard. When you finally tell someone, they may say, “I had no idea. You looked so happy today,” or “You look fine to me.” 

Any response like that proves my point. The way we look on the outside is not an accurate depiction of the way we feel on the inside. Therefore, I believe a pain scale should not be based on our outward emotions and appearances. Instead, we should be able to express how we feel on our own terms and in a way where our pain can be understood. So, I suggest you make your own pain scale… I did!

Miller’s Pain Scale:

1-3

  • My “normal”

  • Slight pain

  • Not affecting my physical ability

4-6

  • Irritable pain

  • Slightly affecting my physical ability

    • Walking slower 

    • Cannot stand for very long

7-8

  • Constant pain 

  • Affecting my physical ability 

    • Can barely walk (need assistance)

9

  • Consuming pain

  • Affecting my physical ability 

    • Can hardly move

This pain scale isn’t glamorous, but it’s my reality and it helps me gauge my pain. When my doctor asks for my pain level, I can explain my scale and the level I am currently at. Using my own scale helps me explain how I am feeling in a clear and concise way. This has also been a great way to communicate how I am feeling with my friends and family. 

Everyone’s pain scale is different. My seven is not your seven, and your three is not your friend's three. This is your opportunity to be understood, and not be confined or overlooked by the same pain scale everyone is given. I encourage you to create your own pain scale and share it with your friends, family, and doctors. If you do this, the next time you're in pain you will be able to tell your friend you are at an 8, and they will know and understand how you are feeling regardless of the look on your face. 

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Persevering Through EDS