Someone recently asked me to write a post about what to say/not say to people in your life that are struggling with a serious illness. And although I love the idea of these posts and have gained a lot of insight from some of the posts on this subject that were written by others, I always worry someone will assume the post is about them and get offended. (There is always that one person that thinks everything is about them – you know who you are, you are reading this right now and asking “is she talking about me?” Yeah, you.) And I don’t want to offend anyone, but I do think there are many well meaning family and friends who DO want to be helpful and say and do helpful things but don’t know how.
Getting very sick at some point, I think, does help you develop some perspective on this. And one of the articles I did read that really resonated with me is this one:
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
The article reminds people to think about where they fit in the grand scheme of what is going on in someone’s life. This, I think, is key to being supportive. Don’t put demands on people that are in the middle of a crisis. This is not about you. Think about how you can be helpful but not a nuisance. Don’t make things worse. The other point the article didn’t make but is just as relevant is: don’t disappear. If you talk to people that get a serious, prolonged illness, this is the most heartbreaking thing you hear. At some point, people just stop showing up or checking in. And that doesn’t mean you have to be preparing a five course meal for your loved one or family member every day for years, but it does mean that you should regularly check in.
Having been sick changes how I view being supportive. I think it has made me better at being supportive, but really you would have to ask the people I am trying to support to know whether this is true. But here is what I am trying to do. Someone very close to me, very suddenly discovered they have an inoperable, aggressive form of cancer that is going to shorten their life considerably. And things have gone downhill fast since the diagnosis. I love this person and their family very much and this is breaking my heart – so I can’t even imagine how they are feeling. And they live far away, and so I can’t see them regularly as they go through this, although I am going to see them soon. But I want to be supportive. So here is what I try to do:
- Sit down and draw out your best guess of the sick person’s circle (see figure in the article I linked to above) and tried to accurately gauge your position in it. Doing this, I concluded this is around Ring 3, which means my job is to support the immediately affected family and the family members that are directly supporting the inner circle (a member of my immediate family). Going through this exercise helps remind you that not everything in life is about you. And on that note, unless the sick person is your spouse or one of your children? You are probably NOT Ring 1. It might help to draw your own circle first. If you are gravely ill and in the middle of your own circle, who is in Ring 1, 2 and 3 for you? What ring does would the currently ill person belong to in your circle? That’s probably how far out you are in their circle as well.
- Don’t try and get an all-access pass to Ring 1 if you aren’t welcome and don’t belong there. Be respectful of the fact that Ring 1 might only want to talk to Ring 2. But be close enough so that if Ring 2 is letting them down or is entangled in their own crisis, Ring 1 knows you are source of support. How do to this? Stay closely and regularly connected with the appropriate inner circle and run your support up the chain where appropriate. When I heard the news and after consulting with Ring 2 to make sure Ring 1 and the patient were up for phone calls, etc. I called Ring 1 and said that I would like to just regularly check in, but that they should not ever feel obligated to pick up the phone or call me back. The purpose of the calls was just to let them know (1) I was thinking of them and (2) Ring 3 was going to be here, consistently, for the duration. And I then I tried to call at hours that would not disturb them every few days to talk or leave a message saying “I am calling to check in and say that I am thinking about you. I hope everything is going ok today for you. Please don’t feel the need to call me back or pick up – I will call again in a couple of days.” And then keep doing it. Keep checking in.
- Don’t obligate the inner circles to do anything for you. Don’t make them feel pressure or guilt. In my particular case, the regular calls are helpful and appreciated. I know this because I am told the calls are appreciated and Ring 1 and the patient often call me to talk now too. If they had preferred not to hear from me at all? That is A-OK too. The goal is not to make you feel good about your support – the goal is to support them in the way that is most helpful. Make sure they know that. And for the love of god, don’t get mad at them if they didn’t comment on the special meatloaf you made for them or if they missed some important milestone in your life. Don’t tell them how uncomfortable or upsetting your illness is for them or say things like “you’ll be fine” or “well, you look really good.” Just sit down and try to imagine how you might feel if you were in their position, as painful as that might be, before speaking. Even easier, read the dozens of great articles out there by patients that talk about what to say or not say (such as the link above) if you want guidance. As the above article says, dump out, not in. Think about what they are going through. Think about how little physical and mental energy they have to deal with anything other than surviving the day. And cut them a lot of slack.
- Offer concrete things you can do to help – not just “oh, let me know if you need anything” – but don’t push them. Because I am at a distance, I can’t be there to drive people to appointments for example. But I am a good researcher and I offered to try and look up treatments and look at pathology reports, read up on mutations, etc. so they had information and questions to ask their doctors. They are overwhelmed right now and this was something they wanted help with. I did not just send them piles of information, though, or give them unsolicited advice. I still haven’t and I won’t. I gave a list of things I could do to help and I followed through on the ones they wanted help with. I can also fly out and help at a point where they DO need extra help driving to and from the hospital. And when it is my time, Ring 3 will be there.
- If you are outside the first few rings, and you want to continue to have a relationship with the people in the inner ring, don’t just disappear. It hurts to see people just stop showing up. They are already losing so much. Don’t make them watch their friends and family disappear just because the situation isn’t comfortable for you. Do the hard, but right, thing. Just keep being there. If nothing else, keep checking in with Rings 2 and 3. Send cards. Drop off food. It’s not that hard and it means a lot.
As you know if you have been reading this blog, I have my own health problems to deal with, as do many of you. As the article (above) says, at some point everyone will get their chance to be at the center of a circle like this. It is a sad reality but most people will have to face a life-ending illness at some point. Most people will likely live through the death of someone very close to them. Everyone will have to face their own death. But so many of us handle serious illness and death so badly, hurting the people who need support the most. It is never too late, though, to learn a new skill, to do something differently. I am trying. I hope you do too.
a tale of two tumors 