Recently, on Twitter …

I should probably go back and count up how many posts I’ve written that have to do with something I’ve read or experienced on Twitter. I suspect it’s quite a few! While Twitter has changed an awful lot in recent months, it is still a place where I’ve connected with a lot of doctors and patients and like minded (as well as not like minded) people. Having to say something meaningful in a few characters means that the conversation often flows very differently than on other social media platforms.

Anyway, recently on Twitter, there was an exchange that mirrored other exchanges I’ve seen between people experiencing cancer differently. The exchange started with a blog post where the author described how she prepared for her breast surgery and recovery. She highlighted different ways of preparing for the time period where there are restrictions on the patient and how she and her family navigated that. It was clear from the post that the author had solid support and her suggestions were a great foundation for anyone who is experiencing a health crisis. It’s so hard to know where to start when you haven’t had these types of surgeries before and are used to being the one doing all the things around the house. And all of that is before we consider the struggles most of us have with asking for help.

In response to the blog post, several people who hadn’t had the same support responded rather sharply and eventually said more directly (my interpretation) that seeing how someone else was given so much support made them feel as though they’d done recovery wrong, weren’t organized sufficiently, and that the suggestions offered by the author of the blog were insensitive. There were also some references to the size or severity of surgery and the comparing began. For more on this subject, check out my previous blog post on Comparative Suffering.

Setting aside the fact that comparing doesn’t help anyone, the deep pain expressed by many in the conversation was palpable. Each person who shared about how they were not supported, didn’t receive help with clear needs, and had to figure out so much completely on their own just broke my heart. A related topic that often rears its ugly head in the cancer community is the concept of ghosting, which happens in this context as well as overall. For more on that, you can read this article: Cancer Ghosting by Grief Therapist Kelly Grosklags (who you can also follow on Conversations with Kelly on Facebook).

Here’s the thing: sometimes people really suck, especially those people you think you can count on who let you down.

Pretty much every person dealing with trauma has at least one story about someone they thought they could lean on, thought they could count on, who disappeared when they were needed the most. Many times, the people who fit this category are those who are related to us by blood; many times, the people who fit this category are those who have received help from us in the past; many times, the people who fit this category say things on social media to get attention for themselves (this behavior can also be described by the term, Grief Tourists); many times, the people who behave this way cause us to never want to ask for help again.

And watching others who have more support can really really really hurt.

Many times this hurt and angst and struggle comes out sideways. Meaning that those of us who experience this betrayal end up lashing out at people who are safe, those people who haven’t deserted us in our times of need, but continue to show up. Or maybe lashing out at people who are getting the support we’d like to see happen for ourselves. Regardless of how or who, these feelings eventually bubble up. I think this might be because the hurt can extend into the core of who we are, affecting how we view ourselves and what we deserve as human beings. We humans want to be seen for who we are rather desperately.

Here’s a few things I’ve learned ….

First, to prioritize those relationships that are reciprocal. Watch for those who show up, who follow through, who you can count on. This may be a short list and that’s ok. Most people only have a certain amount of energy for pouring into others and when you find those people, hang on for dear life. I have found that I have to have a certain critical mass of people giving back to me to be able to give to others. Your number might be different from mine, but I do think that having a core circle is really key.

Second, if you find yourself in the midst of those relationships where you are pouring into others without reciprocation, consider appropriate boundaries. For example, limiting the number of people you support or perhaps adjusting the ways you show up for people. Each person is so unique in this and most of us figure this out by trial and error, by getting overextended and having to pull back. Wherever you are in this continuum, having those core people pouring into you who alert you when they see you depleted can be really important.

Third, practice walking away from people and things that don’t serve you well. This might look like saying no to a project or a request. This might look like taking a break from social media. This might mean muting accounts online that trigger you. For me, this meant leaving support groups that included mixed stages of breast cancer. I don’t begrudge others their celebrations at the end of cancer treatment, it just gets harder over time to see those celebrations when so many of my friends are dying. I’ve either unfollowed or left those groups on Facebook for my own peace. Prioritizing our peace is not selfish, it’s a necessity.

Fourth, consider seeking out professional help and if that professional help isn’t helpful, try another. I knew pretty quickly after my diagnosis of MBC that my normal coping mechanisms (and I have quite a few of those) weren’t going to cut it. I got a referral to a psychiatrist and have been on various medications to help with the mental health side of things ever since. Additionally, I’ve met with a variety of therapists and psychologists over the years, with varying levels of satisfaction and support. I’ve had appointments with professionals who literally told me that I should be teaching them to cope, not the other way around. And I’ve met with those people who touch my soul in a unique way and help me to shift my perspective. The point is, seeking out professional support isn’t always easy, but it can really be worth it if you find the right fit. That fit might take a few tries but its a tool that can be really helpful.

Fifth, consider that trying the same thing over and over and not succeeding might mean that it’s time to try something different. When I find myself beating my head against the wall over and over, my husband is the one who usually reminds me that what I’m doing isn’t serving me. Having the voice of sanity to help me shift directions is so necessary. It’s hard to come to the understanding that we are just not going to fit everywhere and with everyone. Doesn’t mean that there’s anything wrong, just that we’re all so unique and need to find where we fit.

None of this easy.

Coping with a serious trauma is hard.

We are each worth the effort to find and maintain the level of support we each need.

And I firmly believe that karma will take care of those people who have lost the opportunity to show up, eventually.