Thursday, March 1, 2012

Social Media And Communicating With Someone With Cancer Or Their Family

First, this is a post I wish I didn't need to write. But I'm seeing too many comments and too many reactions to comments to stay quiet. I've actually had a few people email and message me asking for help in this area. People want to know what to say. So, this is meant to help us all when it comes to using various forms of social media and email when communicating either with people who have cancer or with someone who lives with someone with cancer (spouse, parent, child, or significant other).

Second, I fully believe most people truly do mean to be helpful and supportive. And, for the most part, are helpful and supportive. But sometimes we can slip up. Sometimes we can write something we think is spot on and it's actually very hurtful to the recipient.

I've had the benefit of pastoral care courses. I've had the benefit of Hospice training. I've had the experiences of people coming to me with anguished stories. I've seen the comments on people's Facebook pages that made me wince and I've read the responses that proved my winces were well-founded. Based on all that, I want to share just a few tips when using social media and email when communicating with people either with cancer or with their closest support system.

Always remember email and social media are "flat." People on the reading end of what you write cannot see your body language or expressions. They cannot hear you chuckle as you write that "joke" or see you snarl if you're angry. What they read is completely void of expression ... even when smiley faces and lols are provided. Think a moment about the times you've read a comment with a smiley or lol and thought it just didn't fit with the comment. Look at what you've written and leave the smiley and lol off. Can it stand alone and still come across as helpful and supportive? If not, don't add that extra gimmick. Instead, reword what you've written. This is especially crucial if you are writing something for a person with cancer or their loved ones to read.

We don't try to be thin-skinned and most of us probably think we've developed a rather thick skin because we know what we live with and have had to. But words can hurt and stick with us.

With social media we're in a world where we really don't, often, know each other. We have "friends" and connections that we will never meet face-to-face. We can jump into "conversations" that complete strangers are having and offer our own two cents. Even when we do know the people, we can jump in and offer our suggestions, opinions, and stories, trying to help and meaning well, but we can cause a great deal of pain.

Whether you actually know the person or not, before you jump into a conversation:

Follow the person who began the conversation's lead! If the person says they are having a difficult time dealing with a certain aspect of cancer, death, or watching their loved one go through this and they feel helpless, please, please do not take this as an open door to tell them detailed stories of So-And-So's agony and excruciating death. They do not need or want to hear that. If, and only if, you can say "I've been through something similar and I'll be glad to share with you how I coped if you want to hear it" then only share that much. The person can then come back, if they want to, and ask you to please share your coping strategy. Or they can let it drop.

See, it's not about you! It's not about your story. This is about them and what they're dealing with. Even for those of us who share similar situations, we are not the same people! We do not have the same life experiences, values, morals, beliefs, or family structures. We have nothing that is absolutely identical! Nothing! So again...

Follow their lead. If something particular has caught them off guard and they're hurting or questioning, remember you really don't know their heart or what they're thinking. If they acknowledge "pain" or "doubt" or "confusion" or anything else, agree with them. Yes, that must be "fill in the blank" ...encourage them to do what they need to do at this point in time to cope. Now is not the time to tell them it's all OK or tell them what you would do. Now is not the time for false pep talks. They know better. They need honesty but tempered with love, hope, and encouragement. Acknowledge what they feel and encourage them to deal with it their way and then encourage them to pick themselves up and forge ahead. Remind them you're praying for them through this season.

Those of us with cancer, or who love someone with it, know the score. Whatever cancer we've got we know what we're dealing with. We know what the doctors have told us. We know what treatments we've tried and what treatments are available. We know the stats. Trust me, we know it better than you do. And we live it. When we tell you everything is not OK, we don't need or want you telling us it is. Our families don't either.

So, what can you say? "I'm praying for you." "I'm thinking about you." "What can I do to help you?" Or say nothing but just be there. And understand we may not make the choices you think you would make in similar circumstances. And we don't want or need to hear that either. What we need is for you to come alongside us and say "How can I support your decision?" If you only know us through social media, tell us you're praying for us.

If we announce that we or our loved one is going to start a particular treatment, that is not your opportunity to tell us a horror story and that you would never do that, but you would do this instead (whatever this is).

If we have been told that medicine has done all it can, there's nothing left to try and we or our loved one is going to call in Hospice, we do not need or want to hear that you can't stand Hospice and you'd rather "fill in the blank."  If we say we're going to the hospital to die there, we don't need or want to hear you'd call in Hospice. Get my point? We aren't asking for permission or asking for your opinion of what we've decided. We're informing you. Period. Hold us in prayer. Don't remind us of "hope" and "miracles" when we see death coming. We've got hope! We still believe in miracles! We're holding God's hand tighter than you can imagine! But we also see what we see and we've got to deal with reality as it is. If that reality changes and a miracle happens, Hallelujah! But it might not. You might not like or agree with our attitude, but it's ours. Accept it. And if you don't accept it, please be quiet about it.

Carol here, I can't begin to get across the amount of pain I've seen inflicted on people by others who are well-intentioned but get in people's faces and forcefully reject the idea of death when it's coming. It hurts families! It hurts the one who is dying! They have prayed and ARE praying for that miracle! Those who are losing their spouse, child, parent, or sibling LOVE that person and hurt more than can be imagined. They HATE what's happening, cannot stop it, and would if they could. They are vulnerable and need support. If you cannot provide support, please provide a quiet mouth and silent prayer.

Social media is a wonderful tool. But it's only as good or as bad as we make it. It's a tool. It can build up or it can tear down, It can be used to provide support or it can be used to inflict pain. The same with online support groups. I love them and I'm a member of several. We need each other to get through what we deal with whether we are the one with cancer or the one who loves them. We understand where we are and what we live with.

But, even then, we need to watch what we say and how we say it. If you remember to follow the one who posts lead and not buck them, you'll probably be OK with what you write. Just remember, you know what tone you're writing with, it will not come across through flat cyberspace. Ask yourself, do they need my opinion or my support? And, if you can't think of what to say, either say nothing or say "I'm praying for you." You can never go wrong with that simple statement.

Then do it. Pray for them.

They'll be grateful.