My Problem With the FACES Pain Scale as Someone With Ehlers-Danlos Syndrome

I’d like to take a moment to talk about the Wong-Baker FACES Pain Rating Scale and Ehlers-Danlos syndrome. You all know this scale – it’s the one that has faces with numbers underneath ranging from zero for no pain to 10 for hurts worst.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

 

Theoretically, this scale is a great tool; the problems with it arise when doctors see people like me. I have EDS and live my life at a constant four. That said, some days can be threes and some days can be sevens. EDS is not the kind of disorder that schools or even doctors are accustomed to dealing with. Schools can handle familiar illnesses. Then the unfamiliar hits them and suddenly it seems like there’s nothing they can do to make my life easier.

School started in September and on that first Thursday, I was having a seven kind of day. Every part of my body hurt from my ankles to my neck, so naturally, at the end of the day, I went to the nurse to lay down. I have an Individualized Education Plan (IEP) for both emotional and physical issues, and for the emotional side of my problems the IEP is absolutely fantastic. However, for my physical issues it is incredibly generic.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

 

I don’t participate in a physical education class; instead I do physical therapy once or twice a week and have an extensive home program I do every day. In addition to this, I have a set of textbooks for school and one for home. The problem with this is it has recently gotten to the point where it is difficult for me to even carry what little I have in my backpack. It’s hard for me to walk from class to class and on a lot of days I have frequent dislocations and other issues while in class. Sometimes I need to lay down for a while during the school day, and yes, it may come at inconvenient times such as during math class or English.

The thing I wish adults and friends in my life would understand is I know I am missing a class, and I do not ever want to interrupt my education. I learned a very long time ago that you have to push through the pain, and you can not spend your life in a ball on the floor. I am aware of this fact, and I do not like when doctors, teachers, nurses or others tell me I’m overreacting on days when I do have to spend all my time in bed.

What I’ve said before and will not hesitate to say again is that no one else is in my body. I’m the one living my life, and I push through each and every day knowing I can’t collapse until I’ve done all of my obligations. So when someone tells me I should just keep going and live my life above the pain because I’m blowing it all out of proportion, I’d like to know if they could get through an entire day of their life at a seven. This is disabling pain that leaves a person unable to live their life normally. If there ever comes a day when I need to use a wheelchair, whether I’m 75 or 17, I expect not to be judged for it.

So what happens when even the people close to you think you’re exaggerating? What happens when your pain isn’t visible enough to be considered real? What do you do when there’s nothing left to say? Please, let me know when you figure it out.