What do I say? How can I be supportive of my friend–or family member–at this incredibly difficult time?
Many people have asked me that.
I am going to suggest three “rules” (for lack of a better word) on what –and what NOT– to say if you wish to be supportive of friends or family during an acute or chronic illness.
Rule #1. Don’t Compare
My favorite authority on how unhelpful comparing one disease to another can be comes from the wise voice of Lisa Bonchek Adams, who posted in her blog:
“Different diseases cannot be compared. Different cases of the same disease cannot necessarily be compared, either. Chiming in with, “Oh, my second cousin’s boyfriend’s dog walker had breast cancer” doesn’t help a person, especially if it’s followed by “She suffered in pain for a long time and died” (yes, this gets said more often than you can imagine). The other end of the spectrum is, “Oh, I know someone who had that. They’re fine now.” (Okay, but some people are not fine…should they be jealous? Feel inadequate?). Someone told me in response to learning I had metastatic breast cancer that his wife “had a bit of that last year.”
I am supporting Peter (not his real name) through the process of being evaluated for a transplant for a condition that affects many members of his family. When he told me of the pain he was in, I asked what his family members did when they had that pain–just to get some ideas. “They never have had this,” he said. “It affects all of us so differently.”
Being evaluated for a transplant can be a stressful process. The challenges are many: there are the inevitable insurance issues to untangle, there are concerns around identifying a donor, concerns around communication among the many specialists required, and worries about the effects of medications that need to be taken for life to prevent rejection. It is a lot to assimilate.
I asked Peter about his support system–friends and family. Some of his friends understood, he said, but some of them didn’t, and that was really hard for Peter. “They just have no idea–they don’t have health problems in their family; everything is great. And they tell me about friends of theirs who had this transplant, and how easy it was for them–why can’t I just be upbeat about it?”
I told Peter about this fantastic video about the difference between sympathy and empathy by Brene Brown, a professor of social work at the University of Houston–he might share it with his friends, to offer them a fresh approach to a friend with a chronic illness.
I love the way the “bear” in this video shows empathy: how he identifies with his friend’s sadness or feeling of loss—and just sits with him, feeling that with him, in the moment.
Rule #2: Avoid these constructs: “At least…” and “If Only”
Comparisons can be implicit too–I think of the “at least” and “if only” phrases as really just another way of comparing. After I watched Brown’s video, I would catch myself using those phrases–and then banishing them from my vocabulary.
When another client’s child was diagnosed with Type 1 diabetes, a friend told her—“But at least it isn’t cancer! A friend’s of ours’ son has leukemia.” Which of course just made my client think—but at least leukemia could potentially have an end…Type 1 diabetes is forever.
The “at least” comments–perhaps well-intended efforts to minimize human suffering– generally (though not always) come from others. The “if only” thoughts are usually our own. One of my clients told me, “if only I had breast cancer…Then people would understand—but I have this rare thing!”
If only. “If only” we had this other, popular, well-understood disease—we would be “seen” by our community, valued, loved, cherished.
Ironically, it may be true that society does seem to view struggling with certain illnesses as admirable while others can be subject to stigma, misunderstanding, even mockery.
But I find that neither the “at least” thinking nor the “if only” thinking gets you anywhere. It certainly doesn’t make you feel better.
I find it’s better to start with the present. Here I am, now, today: let’s start here, with the diagnosis I have now: what are my options? That’s where having a friend or an advocate can help—to support you in exploring those options.
Rule #3: Believe How People Say They Feel.
People can look a lot better than they feel—so remember to treat them how they say they feel, not how you think they look. They know.
One of my clients, Lizzie (not her real name), said that family members and friends told her she looked “great” after she had major abdominal surgery for cancer. But she was exhausted all the time and really could barely make it through her day. She was terrified about going back to work–she could barely make meals for her kids; how was she going to stand up to the stress of work? And she had taken all her allowed medical leave–how was she going to attend all the doctors appointments she now had to keep?
I heard a similar story from a fellow physician and close friend who had had a similar surgery for cancer. I had never asked this friend how it was for her after surgery, and she looked great when I saw her a few years later. But she told me, “Look, OK, I could do some things—but that took about all I had…But people judge you—because maybe you look OK and they don’t know how you are just barely holding it together for the kids. The surgeons take everything out when they do this lymph node dissection—snip out all the lymph nodes and other stuff; then put it back all wrong. I felt like I’d been beaten with a baseball bat.”
After these two experiences, I understood that regardless of how people appear to others, only they themselves really know how they are feeling. Grounding my advocacy for Lizzie in her own description of her situation and needs enabled us to secure her the accommodations she was entitled to. She was relieved that she would not be penalized for attending her doctor’s appointments; and most of all, relieved to get the support she needed from her doctors and friends — both physically and mentally.
I’m not sure there is any tried and true road-map to the right things to say and do–but I hope these few thoughts may offer a place to start.
