What do you say to someone who has just disclosed to you that their life is a constant struggle with pain and illness?

You are talking with a casual friend; you just met someone and are hearing about their life; you ask a question of an acquaintance and it leads to raw details you didn’t expect. You are uncomfortable and wish you could get away. or you are moved to really care and want to say something that will make their pain less. 

What do you say? 

How do you respond? 

COMMON ANSWER ONE: “It’s going to be alright.” “Everything will get better.” “You’ll be doing better soon.”

Assurance that everything is going to be alright is okay for close friends and family who have lived this illness with me day after day and changed their lives to help me through. It is not an appropriate response from a new acquaintance or a friend whom I don’t regularly share the intimate parts of my life with. And with this kind of response, even the intimate friends probably need to watch out.

In most situations and from most people, such a response is designed to make you (the speaker) feel better, not me. You may think that your desire to reassure me that everything will be alright comes out of the burning compassion and love you feel for me when you hear how difficult things are in my life. But most of the time, those words actually come from your desire to alleviate the discomfort you feel at my pain. It is uncomfortable, even intolerable, for you to think of me suffering, day after day with no reprieve. You want to force all the loss and pain that makes up my life not to be true, or, at the least, not to be true much longer. You grope around for some way to do that, and what you come up with is, “Its not that bad, it will be okay.”

The truth is, it probably will be okay. Because I am a strong person who can find a way to love my life no matter how painful the path I am given. But that doesn’t mean it is not “that” bad. It is every bit “that” bad. I’m just every bit that strong. 

And no matter whether I’m okay or not, the fact is, you have no way of knowing whether I will be okay or not. You have no way of knowing whether I will break under the pain of things or whether my body will continue to deteriorate until I cannot walk or go to the bathroom by myself or speak clearly anymore.  You have no way of knowing whether my pain will increase until I am unable to bear it, or I will become too weak to lift my head off my pillow, whether I will gain weight uncontrollably, become ugly and develop neurological twitches which people will stare at in public. All of these things are possible and the reality of my life is that I have to consider them, worry about them, be aware of them, every day. 

Flying

     I almost got kicked off of a United flight today. I didn’t - I’m still on that flight as I write this, somewhere over Kansas, I believe.

     I arrived at the airport, traveling alone after visiting my husband who is working out of state. I hate traveling alone because this illness makes a day with that kind of energy output miserable, and because, if I begin to have problems, I am very much alone in dealing with them. We’d ordered me a wheel chair, but I didn’t go get it because a) I wasn’t sure where to go for that and b) I thought I could get by without it. I began to question that decision at the first long line I had to stand in. Standing for very long is difficult for me. But my gate wasn’t far away, and, while I was feeling ill and shaking a bit by the time I got there, I made it to the gate. I told the woman at the desk that I would need to pre-bored, as I didn’t think I could handle standing in another line, and she got me on the plane first thing.