A Secret Decoder Ring for Loving Chronic Pain Sufferers

With Ehlers Danlos Syndrome everyday is a surprise as to what it will bring and how my body will handle it. Most people I know who suffer from a chronic illness or pain don't like to complain about their pain nor do we enthusiastically share our newest and medically unexplained ailment like we are in a competition for who is toughest for making it through the day. We are silent warriors, who know all too often that the price for what we accomplish today will come due tomorrow. When you suffer from a chronic illness and are also a parent, you have the added fun of trying to balance being the parent you want to be with the parent you are physically/emotionally capable of being at any given moment. And that is a tough thing to understand as an adult, let along for your kids who can struggle to understand why yesterday you could play catch and today you aren't up for it.

There are everyday niceties that people exchange with their loved ones, their friends and colleagues that, for those of us who live with the daily ups and downs of chronic suffering, we have developed a code to answer so we can avoid the - head titled, sigh inducing, sad face - that comes if we actually engage truthfully with what we want to say. It just isn't polite after all to drone on about how lousy you feel. And for those of us paying attention, we know most people don't really want to know how we are doing; they are just being polite. I can imagine this is frustrating for those of you who love us, but honestly it isn't meant to keep you at arms length. It is our way of trying to be in the world in a way that doesn't draw pity or disgust (if your illness is invisible or hard for those around you to understand) but keeps us engaged with society.

So in honor of those who love us, here is a secret decoder guide for that one question I know I hear the most. It might help you understand a little bit better what we really want to say but don't have the emotional energy to deal with at that given moment. It's simple enough a question but when the answer is anything but simple this can feel like a loaded question to your chronic sufferer.

 Q: How are you?/How are you feeling today? 

A: Fine -  But what we really mean is: "I hurt and I'm not sure I have it in me to do what is left for the day, regardless of what time it is. It was a tough day and I might not be able to put my finger on it and dissect for you all that hurts and why. All I really want to do is curl up in bed and pull the covers over my head. On a scale of 1-10 of pain with 10 being the worst, I'm a 12." 

 A: Okay -  Translate that to: "I've had better days, but I've had worse. There were moments, albeit brief, when I was distracted enough by the kids or work to not notice the throbbing pain in my neck and head. There were also moments where the pain took my breath away and it was all I could do to carry on and minimize anyone noticing." 

A: Good - This one is tricky, good is good right? It's not so simple. Good for your chronic sufferer can often mean, "I actually feel pretty decent today; yet I'm worried that it won't last and that any moment I will feel the crushing headache and dizziness from the dysautonomia. Or possibly sneeze and dislocate something because my joints aren't held together properly. Or I'll simply misstep and fall. Or the mysterious breathing issues will just pop up and render me gasping for air but trying to finish what I'm saying. I'm trying to live in the moment and enjoy what is going on around me, but it could all change in a blink of an eye and without notice my day will suddenly be on its head." 

A: Great -  I save this one for the special days. When being optimistic isn't an exercise in extreme will, when my pain management is working and life's little obstacles, such as that lego on the floor, didn't send me crashing to the floor yesterday. When I feel accomplished and proud of all that my body could do - even if it isn't what it used to do - and when I don't feel like the day could be stolen from me no matter what turn it takes.

How we are, how we feel - it isn't just about our pain, but also about our state of mind and our faith in ourselves to prevail. So bear with us and know that even on a day where we tell you we are fine we could later in the day feel good or maybe even great. Know that as our loved one there might not be much you can do to move the needle for us but being there is enough.