I am thankful to Chelsey Gomez and a recent Journeying Beyond Breast Cancer weekly blog roundup for learning this term: “Grief Tourists.” You should check out her writing and follow her as well as the weekly round-up of blogs.
I also like the definition below from BladderCancer.net, a HealthUnion site like AdvancedBreastCancer.net, for which I am a contributor and sometimes moderator. HealthUnion recruits the patients who are the experts in living with their individual diseases to educate others and you have a serious or chronic illness, you should check out their offerings.
Anyway, Brittany Tellekamp, a real person living with Bladder Cancer, tackles this hard topic and begins with her definition:
Grief tourist: someone who pretends to care about your chronic/serious illness on social media, but never offers their help in any real meaningful capacity.https://bladdercancer.net/members/brittneytellekamp
One piece of this experience that Brittany didn’t tackle head on (hopefully she doesn’t have to deal with it) are those people who pretend to care, post about how they care on social media or tell directly to others, AND receive kudos when not actually doing anything at all. In fact, some of these grief tourists cause harm in that they might help in a small way and then complain about the imposition later, while getting public accolades from their sycophants who are clearly snowed by their fantasy of being so helpful.
Chelsey writes about how dealing with grief tourists is exhausting/stifling, that she felt the pressure to put on a good face in public while drowning internally. Here’s how she describes it:
The strange juxtaposition of utter pain, destruction, and sadness in my private life and the brave, strong, and positive patient in public was stifling.https://www.curetoday.com/view/patients-with-cancer-don-t-owe-grief-tourists-anything
This pressure to be “up” to be dealing well with cancer, with our impending death, with all the things that we carry is so stifling to me. I’ve never responded well to the pressure of others to be something that didn’t feel right to me and this whole cancer experience is nothing different.
Brittany goes on to say …
I have come to understand that these people were “grief tourists.” This is a term that describes those who do not really care but are there with buckets of popcorn watching the show. Some are there because they want to feel better about their own lives. Some are there because they want to feel connected to something “big.” Some are there because they want to portray a certain image. No true grief tourist is there for the person in the middle of the tragedy.https://www.curetoday.com/view/patients-with-cancer-don-t-owe-grief-tourists-anything
As I mentioned above, I’d add to this list of tourism, there are also those people who accept accolades for being part of the life of a person with a serious or terminal illness, who behave as though they are somehow part of the lives of this person without actually expending any effort. These pats on the back, whether in person or on social media feed the ego of the grief tourist and create a false narrative that only hurts the person who is actually going through the tragedy/illness.
I have lots of empathy for the people around me who will suffer and grieve my death. Suffering and needing help and grieving are all natural and normal and require support. Everyone deserves support in their suffering, just not at the expense of or hanging onto the person actually carrying the terminal diagnosis. Rather than getting kudos for providing support you haven’t actually provided, maybe consider showing up for the person in your life who is suffering or at least acknowledging that you aren’t part of their lives.
Let me just say, if you think you might be a grief tourist or have behaved as such at some point, take some action today. And yet, if you are thinking you might be, you probably aren’t, but always a good idea to review/consider. Reach out to those in your life who have been affected by cancer and ask specifically how you can help — there is always something those of us need.
For those of us who are discovering that these grief tourists exist, here are my recommendations:
- Consider if the person is someone you want a relationship with. If the answer is no, then consider blocking them. If the answer is yes, then read on.
- If the person is someone you want a relationship with, then consider whether a conversation is in order. If the answer is no, then really consider blocking them. If the answer is yes, then read on.
- If the person is someone you want a relationship with and you think that perhaps they might be open to a conversation, then definitely don’t blindside them. Send this person articles or outline what you want to say beforehand so they are ready. Have specifics they can do in the future or things that you would like them to stop, very specific.
- Be prepared to be shut down. And then consider blocking them.
I have come to understand that my peace and my stress level have to be first for me. As someone who has been in a caregiving role during the majority of my life, as well as someone who was rained in a Midwestern home, this is something I really struggle with internally even when I don’t show it externally. While I may be fierce at times at protecting myself and my boundaries, those reactions are hiding the marshmallow heart that is underneath. Those of us dealing with such a huge burden of illness and grief and trauma, we just don’t have the same ability to care for others. This has been a hard realization for me and one that wasn’t easy to see.
Sometimes blocking people and moving on is the kindest thing we can do for ourselves and others. And it took me about 6 months of therapy to get there.