Ongoing “Support” Conversation

Editor |

Our conversation about the concept of “support” continues on, but so far it seems interesting to reflect on where the conversation has gone over the last few weeks. Some of our contributors focused their perspectives on the challenges that giving and receiving support can sometimes create. Others wrote posts that seemed to speak to these difficulties, and answer them.

Patient Betsy wrote about her determination to retain a sense of independence from the need for support:

“I’m not good at asking for help, and not always particularly graceful in accepting it. So much of my sense of self is my sense of independence – that I am smart and self-reliant and that I can do whatever I set my mind to.”

From this point of view, Betsy pointed out, accepting even well meaning support sometimes felt like a “challenge [to] my hard earned sense of self”. Partly this can problem can be avoided by “redirecting” misguided offer of support, and Betsy suggests that those trying to help should remember that “the key is to be authentic and to listen to what a person actually wants rather than assuming you already know”.

In her perspective, Meg also offered another way to think about the problem of feeling like accepting support is losing that sense of self. She writes that “support is all about the cycle of sharing and receiving”. When feeling uncomfortable about accepting an offer of support then, it might be helpful to remember that we all share a circling balance of give and take, which means across our community of care it’s never really a one way street. In his post, Daisuke pointed out that “we often feel ‘supported’ rather than ‘supporting’, when we are doing something for somebody”. In that sense, it’s also good to remain circumspect when feeling guilty about accepting support – those who offer it might feel you are helping them by accepting it.

Support WordcloudDon’s perspective raised another interesting aspect of the concept of support: that support is “individually defined and situationally dependent”. This leads to the question, how can we talk about what support really means, when it’s always personal to each of us?

Again, our conversation offered some useful ways to use this individual sense of what the word means to help others. Mara agreed with Don, that “support comes in many flavors and colors and what is supportive to one person may be incredibly unhelpful to another, so I think it is an art to figure out the right balance of support”. This important challenge can help to drive our thinking as a cancer center:

“We are definitely starting to look to the hotel industry, at the “concierge” model […] where can better tailor education and support to a patient and families individual needs”.

Following all these points of view, we’ve also created a word cloud for this discussion, which allows us to see what the most common words from all the conversations about support have been. Bigger words on the word cloud have been used most often, and smaller ones less often. (We filtered out the keywords “cancer” and “support” from the cloud, since they were used so many times).

Please feel free to add your comments below about what you think this word cloud shows us that community can mean.

Comments

  1. I find it incredibly unsupportable when I must debate friends about what I am feeling as opposed to what they think I should be feeling.

    angela | | 8:46pm

  2. Support means to me not being judged or told what you should do or how you should do it. Support means to me connection with your doctor’s when you are a gray person having a gray doctor not one that sees just black and white. Thank you to my Dr at MGH for seeing gray. Just having her answer my questions with no sense of judgment in her answers was huge support. Not being told or reminded I seemed nervous and just giving me the information I needed to make a smart decision. To be empowered and reassured what was right for me was OK and the right decision for me. To have those closest to you not turn away because they can’t or don’t want to deal with it. To not force you to deal with their crappy response when your trying to process your own. Support is the friend who surprises you with a thoughtful card and a hug. Support is having doctors you feel comfortable with. Not having to wait for test results and being responded to in a kind manner on the phone. Thank you MGH for patients to be able to talk to a live person at the clinic when you call not a relay service. Support is finding things that help you stay centered and calm through the process you have to deal with. The healing yoga or the meditation tape that helps you feel reconnected with your body and reminds you things can feel good again. Support is the knowledge that we are so lucky to have quality medical care at our finger tips. Support is knowing going forward your Dr will help you be smart about what things need to be checked out and what is OK to just watch.

    M | | 3:01pm

  3. It’s good to have the chance to reflect on this. My fiancé was diagnosed with gastric cancer about ten days ago. We were supposed to get married in July and his diagnosis and treatment – the cancer is metastatic – has, as one would expect, derailed life. We are still in a bit of shock at the abrupt change in our life together; we had absolutely no idea he was so sick. It has been interesting and sometimes frustrating to be on receiving end of what people think is support – in many instances, it is what others want rather than what we want. I understand that people respond to feeling powerless and want to do something; it helps them feel more in control at a time when so much is out of our control. But – ironically – all the doing is NOT supportive, not for us anyway. The most caring thing others can do is honor that there is no one way to go through this, to accept all the feelings that show up without judgment, and to let us ask for what we need – this last one is critical. We need to be able to ask so that we feel some agency over our lives. Oddly, too many of our loved ones don’t get that, and it makes treatment and recovery more difficult because there is the worry about hurting their feelings when we say, “No, we are not ready for a visit,” or “Please stop telling me to go for a walk or go shopping.” As a society we need more practice in acceptance, in bearing witness, in simply listening. These to me and my beloved are the most supportive acts of all.

    Melanie | | 2:44pm

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