"Why Can't I Make People Understand?"

"'Oh, you look so good!  You must be feeling a lot better.' It's a kind word of encouragement and yet we've all felt the twinge of "if you only knew" that sparks possible heartache or resentment.  They don't have a clue how poorly I feel. It took everything to get up today and brush my hair.  Little do they know! Emotions well up within our heart as we contemplate to smile and say, 'Thank you' or jump into our lament of 'Well, I feel  a lot worse than I look...'"

taken from: Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why (Conquering the Confusions of Chronic Illness) (p. 9) by Lisa Copen, founder of Rest Ministries, Christian support ministry  for the chronically ill

I did not write those words, but I sure feel like I could have.  It's strange to think that a comment like "you look good" could bring such hurt and frustration.  I know people mean well in saying it, but from the perspective of someone who struggles with chronic illness/pain it feels like the person means, "if you look this good you must not really be sick".  This happens to me probably weekly as I go to church, Wal-Mart, work, etc.  The thing is people don't realize that in order for me to go out to a family gathering I spend the 2 hours prior laying down and resting. Or that while I do make it through church I am sitting there on my cushion with burning pain and debating on how much long I can make it before I must stand. Or that yes, I endure an 8 hour work shift only to spend the next day laying on the couch most of the day recovering. 

It seems like if people see me out and I look ok then I must be better (I'll often get the comment of, "So, you're doing better?"). In my pride,  I want to say, "No, I'm not doing better, in fact in the last 2 weeks I've developed a new symptom of burning pain in my knees, in addition to my feet and sacral/perineal area, which makes it really hard to stand. So now, I can't sit or stand without a ton of pain!" Or I want to say, "No, I don't feel better. I am just trying to live life the best I can. You know there are a lot of people who live in daily pain and they can't just go around talking about it all the time!" Or even worse, I don't want to go out of the house so people will realize that this pain is really bad! Of course, I don't say these things and I try to live as much of a normal life as I can, but if I don't point these things out to people I worry that they think chronic pain is not that bad or worse, that I am "crazy".  Ironically though when people don't say anything at all, it also is irritating because then it feels like they don't care that I hurt!

But even if I do point out these issues, the other person will never be able to understand exactly what I am feeling.  And that's really what this book is about-since most people cannot understand what it is like to be a pudendal neuralgia/chronic pain sufferer I must learn to let go of these feelings of worry, fear, disappointment, and anger when others do not seem sympathetic to my pain.  Copen says, "This book's purpose is to examine our own desires and then transform them so we can move forward in our spiritual growth instead of withering under the burden of unmet expectations"  p. 16

This book is filled with scripture and points to the One who truly can identify with our suffering and comfort us in our pain. It is a great book for both the chronic illness sufferer as well as those caring for someone with a chronic illness. I think it will help a spouse, friend or caregiver be able to better identify with the mixed emotions we go through and how to help point us to the truth in our weakness.

Other questions that are addressed in this book:

"Is it okay to get mad at God about it all and express your true feelings?"

"How should you respond when people say hurtful things about your illness?"

"How does your attitude affect whether you get the kind of understanding you seek or not?"

"What happens to your spiritual life when you feel alone and misunderstood in your pain?"