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. 

Assuring me that these things wont happen (“Things will get better.”) is offensive, infuriating, and a slap in the face to me.

The most offensive thing about this response is that I know it isn’t true and I wonder if you think I am nieve enough to consider believing these words just because you said them. The next most offensive things is that you would presume to assume that you could know such a complex answer as how this illness will progress better than I do when I have lived with it every day of my life.

The truth is, I know that you have less ability than me to predict what will happen with this illness. Deciding to blindly believe it will all be alright is a way for you to decide not to have to live with any part of one of the hardest aspects of such an illness - uncertainty about the future. I am certainly not going to be saved from this torturous concern abut what direction my health will take as I age. But here you are, asking me to participate in a lie to help make you more comfortable with this unknown - to help you sleep better at night. And I am offended to be used this way. I am not sure why I have to lie about my life to make it easier for you to be comfortable. 

If you are a doctor and you have tested me and done research and found reason to believe that I wont get any worse, then by all means, tell me. I’ll be relieved to hear it. But if you are not, don’t you dare tell me that everything is going to be alright. Don’t you dare tell me I will get better, that the worst wont happen. You are only convincing yourself. Convincing yourself that I feel better (that I believe you) makes you feel better, eases the horrible feelings your caring for me causes when you see what I am having to deal with in my life. 

Its a betrayal of me.

Its a betrayal because it shuts down my right to be honest about my life. It is the same as telling me that what I experience isn’t true. I know that the reality of my situation is that my future is much more uncertain than most, that this illness could and often does get much worse. I have to deal with that every day. Denying that this is true, telling me that somehow you know the future (when you don’t) and that I am not in danger (when I am) not only makes me feel alone in my (very real) fears, it also makes me feel crazy. Because I have learned enough about this illness, known enough other people who have had it, lived with its changes over enough years, that I know the risk is real. This fear is a part of my every day. And here you are, telling me that it isn’t necessary, when I know that it is. Am I crazy, or are you?

If you can’t bear to know what my life is like, if you just need to get away from hearing about it, have the guts to own your own weakness and tell me so. Say, “I really don’t want to hear any more about this. This is too uncomfortable for me to deal with.” I’ll probably loose respect for you. But I’ll recognize that the problem is in you. I wont have to doubt my own judgments, my own competence, because something you said (which sounded so reasonable and positive) clashed at a basic level with what I know to be true (that this illness could get worse, that my life may not get better). 

Unless you come offering me a cure - a medical cure - you have no place predicting how this illness will progress. And no matter who you are and what you’ve lived with, you have no right to discount the pain that living with this illness entails for me. 

It is not your place to tell me everything will be alright. 

So - what can you say? 

You’ve just gotten to know someone who revealed to you that their life is a constant struggle with pain and illness every day. What is the appropriate thing to say?

Try, “Wow. I’m really sorry you have to deal with that.”

Try, “That’s terrible.”

Try, “I really hope things get better for you.”

Try, “I had no idea.” or “I can’t imagine how hard that must be.” or “You are clearly a strong person to have gotten this far with all of that to deal with.”

Don’t add, “And so I know you’ll be alright.”

Don’t add, “I am sure things will get better.”

You can say, “I hope tomorrow’s better.” or “Is there anything I can do?” or just, “I’m sorry.”

Just don’t try to change it (because you can’t). And don’t try to deny it (because I can’t). Acknowledge it and let it be.

You would be surprised what a powerful difference it makes in my life to have someone look my pain in the eye, acknowledge it, and not try to brush it away.