First things first, a big shout out to Jessica who I used to work with at Starwood Hotels who inspired me to write this post. She's a true rockstar in every sense of the term. If I had a dollar for every shot we've done together... (JK, she's just awesome)
Ok, so let's chat. When you are first diagnosed, you spend a lot of time with yourself and those close to you figuring out what it means and how you feel. It's not easy. It's very introspective and very much an inward exercise. I would have moments where I didn't believe the diagnosis, moments of "this thing is going to get its ass kicked", moments of "I'm not ready to go", moments of "I am at peace with this" etc. Lots and lots of moments. That inner peace and processing lasted for me for about a month or two. It was healthy and not healthy all at the same time. I hadn't learned about my condition, hadn't met others with the same thing, hadn't found support and orgs to help me get through it, and hadn't seen a doctor or a group of practitioners yet. So, as you can imagine, with so many unknowns, my imagination went crazy (and I have quite an active imagination!)
I got to a good point after a month or so. No more morbid planning sessions in my head at 3 am, no more crying about stuff I couldn't control, and no more pitying myself. As I started feeling better, I evolved into an "I feel out of control so I am going to learn as much as I can and get my control back" mindset. And I did. I reached out and met tons of people, joined 3-5 support groups, read whatever I could, watched videos, got recos for Doctors (and met with them), learned about alternative and complementary therapies and treatments, and made a ton of new friends and revitalized a lot of existing friendships. So I moved through those stages (I am not calling them stages of grief but call them what you will) and got to the place where I am now. Determined to kick cancer's ass, knowledgeable about my condition, how I am feeling, and how I will feel, and knowing more of what will come in the future. I am now in control of myself and my choices and feeling good. I am a partner in my care. I don't just sit there and wait for others. That was how my internal work unfolded (and I still work on myself every day).
But, with cancer, you quickly find, it's not all about you. There are a lot of people who like, love, and want to support you. Some know how to deal with what you are going through, some have no idea, and some use comparables pulled from their own experiences. "Oh, you have cancer? My aunt had cancer" even though you and their aunt are completely different with different types of cancer. "I'm so sorry" is the refrain I've heard most. I hate that phrase and struggle when people say it to me.
Then I recognized the shift. The shift from me reconciling where I am, to helping others deal with my condition. My answer? Remove the Pity Load (the feeling of responding to a tough situation when you are not sure how to and feeling guilty that you don't know how to help). I started helping people not feel bad for me, and not write me off or make assumptions about how I will fare. Removing the Pity Load (I should trademark this!) freed people up to better understand me. Things like meal trains, I am so sorry, what can I do, can be replaced by I know someone who can help, I can help you with all of your insurance stuff, you could really help my friend, I know of some experts or other patients, want an intro or other helpful suggestions started to emerge rather than unproductive pity. And it's ok to say "I really want to help but need to think about it a bit" or even not have an answer and just say "I really care about you, I am going to think about stuff". The answers or support doesn't have to come in the minute.
But, fair or not, I began to feel that I was responsible for helping other people cope with my illness, and, in essence, removing the Pity Load from their shoulders. So how did I do it? My first attempt was a test. Someone who didn't know about my cancer asked how I was. My response was "I am happy to tell you, but please don't tell me you feel sorry for me, I don't feel sorry for myself. You can feel sorry for me, but please just don't tell me." They agreed, I told them everything and then had the best conversation that I have had with anyone since my diagnosis. They weren't worried about how to tell me they were sorry, and they offered thoughts, ideas, and suggestions and we talked like two equal people, not one who feels sorry for the other. It was great. I've done the same thing a bunch of times and it continues to work. In fact, the people I have had those pity-free zone discussions are quickly becoming some of my closer friends.
So, if, and hopefully this never happens, you have a friend/family member/colleague/whatever who tells you that they have a serious issue (illness, death, etc) here is what I recommend:
Think about them as a person. What are they like? How do they cope? What helps them? What's the best way to listen to them? and if you don't know, ask.
Don't just say "I'm sorry", it's a conversation stopper. Instead, probe and ask
quick note: in another shout-out to Jessica, a response of "well that fucking sucks" when told bad news can often have a great result if you're comfortable saying it. It's authentic, unexpected, smile provoking, and opens dialogue.
Respond to their news with curiosity, ask more questions, and do your own research. That shows caring a lot more than a casserole does
Cater your thoughts to them as individuals. A meal train is great, but if they are extremely independent offering a meal train might be a bad thing. Don't write people' abilities off because they have a new label (like cancer).
Be there for them. Don't just say you are, actually be there. When I told people about me, I posted on Facebook. A friend said to me "you will get a ton of "I'm sorry", it's the people who check in on you next month who really care". They were so right. You quickly realize who is really there for you and who is paying lip service. Be one of the good ones! Reach out, grab a coffee, do a zoom, whatever.
Check-in. Nothing makes me feel better when I get a random text. Anything from how are you? to did you see that game? is this a chemo week or are you on break? I had an amazing sandwich! says to me that the person knows who I am as a person and isn't just thinking of me as a patient or someone who needs help.
As I always say, these are my thoughts and how I have dealt with this 6 months into a diagnosis. My thoughts work for me and won't work for everyone. I hope, if nothing else, I am helping people not feel like they have to take on the pity load, and helping others figure out how to help remove it.
This is a seriously difficult topic. As always, I am here to discuss it, chat about it, listen, or brainstorm with anyone that wants to. I would love to hear how people respond in these situations so if you feel like it please comment or shoot me a note. Thanks in advance to anyone that does!