All signs point to a social revolution in health. As I’ve put it, the internet gives us access not only to information, but also to each other. Crucial advice can come from a just-in-time someone-like-you as well as from a clinician.
So what happens to people who are shy or introverted? If sharing and learning from others is a key to health, how might we support those who do not easily participate in social settings, on or offline?
A friend wrote to me this week and gave me permission to share his question here:
While putting a ton of energy into helping guide my dad’s care — he’s not doing terribly, but aging incredibly quickly — I’ve learned I’m unable to be there for my mom as much as I’d like. I’m probably the one person in the world she can most talk to, but I don’t have the strength to also help her with the process of letting go of the idea that we can’t fix him.
She is yet another caregiver who doesn’t have the support she needs.
She’s also very private. She has very few friends she’s really open with and would never consider being in an online community.
What to do?
I wrote back:
I’ve been meditating on a related topic for a few weeks: how do shy, introverted, private people solve the problems in their lives? What can I learn from them? How can I walk in their shoes and understand how to serve them, as well as the extroverted?
Because although your mom may have heard about and even believe in the good of support groups, on or offline, she may not be able to see herself in that story. She may some day, but for now, it’s not an option she sees or seeks.
Do you think it would be useful to ask her: When she solved problems or overcame adversity in life before, what resources did she use? Did she talk with a faith leader, read books, talk with your dad, talk with you, seek expert advice in person or on the phone, share the issue with one trusted friend? See if you can guide her to seeing other resources in her life that she can tap into besides you.
What else can we offer as advice to my friend — and to our industry?
I tweeted:
And Kevin Pho, aka @KevinMD, immediately shared two great articles by Toni Bernhard:
7 ways to help your caregiver
6 things not to do as a caregiver
Please continue to share resources and ideas, either on Twitter (and I’ll add them here) or directly as a comment.
Thank you for this post. Look forward to hearing about strategies. My mom is a shy caregiver. We have started using CareZone, a free application for IPhone and Android as well as a web site. My mom uses the journal feature to track her thoughts, observations. We also have the following shared information: my dad’s medications, a calendar of his appointments, a list of his doctors, to do lists. I convinced my mom to start using this app by telling her how it would help me to be able to know what’s happening with my dad, and feel like we could be more organized in tracking his symptoms. I read everyone of her entries and add my own. It helps us to spark conversation. It’s free and private between us so she doesn’t have to worry about cost or sharing information with strangers.
I would like to expand her circle of social connections though. It’s hard to know what kinds of support to ask for from extended family, especially when they live at a distance. She does attend a Well Spouse support group from time to time too. But she can find it hard to know what to say at those meetings.
Thank you, Lucy! What a gift to come home to after a long day – this comment is golden. I love the idea of a private online space for you and your mom to communicate. It is a great first step.
I am replying as an introvert, not about caregiving specifically. It is important for online groups to allow introverts to ‘lurk’ on their sites, and not have to do the whole introduction, here’s my story bit. We will often read and watch for awhile, and then perhaps venture a comment or two. Also, some introverts like me prefer online contact to personal contact as it allows us the privacy we crave. Emphasizing that aspect to introverts may help.
Thank you! It’s so important to design for everyone, including introverts who may be the quietest person on the design team (if they are there at all).
A few suggestions:
Reading the blogs of others in a similar situation can be a huge support–simply because you realize you are no longer alone. Our bloggers care for parents, spouses, children, siblings. I also post questions throughout the week on Caregiving.com; reading the comments posted can be very comforting, too. You realize what you’re experiencing and feeling, which can feel so un-normal, is actually very normal. The Internet introduced us to the beauty of lurking and, certainly, lurking can be a godsend in a caregiving situation. You can participate simply by reading and that can be quite effective. (Our Caring for Spouses blogs are here: http://www.caregiving.com/articles/blogged/caringforspouses/)
I also have podcasts of interviews with family caregivers. On the third Saturday of every month, Holly, who cares for her husband, joins me to update us on how they’re doing. She’s been sharing her caregiving story on my podcast for the past four years. It can be really helpful to also listen to another share her/his story. Holly is incredibly honest during our podcasts and often sheds tears. (The podcasts are here: http://www.caregiving.com/tag/holly-eburne/)
I also would suggest journaling–it’s a wonderful way to write and release what weighs heavy on the heart. (I post journaling prompts on Wednesday for inspiration.)
I also would add that privacy is a huge concern for many family caregivers. They may hesitate to share what’s really going on out of respect for their carees (the person receiving care). You can join CareGiving.com and use any name you’d like. (You do need a valid email address.) In addition, many bloggers will change the name of their caree (or use a middle name rather than first name) so they can share freely.
I hope this helps!
Very helpful! Thank you, Denise. And note you get a shout-out in Leslie’s comment below 🙂
Thank you so much, Susannah! So appreciate these opportunities to connect and share.
Susannah,
As you know, this family’s situation is near and dear to me. A few thoughts:
– The most active caregiving forum (focused on aging) that I’ve seen online so far is at AgingCare.com. I might let this shy caregiver know that it’s ok to lurk and try seeing what happens when she reads what others are expressing. Also, I’ve somehow signed up to get a daily email from the site, which lists 4 questions others caregivers have posted. This can be a nice way to keep up with what people are going through, and makes it easy to spot a discussion that might be relevant or of special interest to me.
– Your friend might want to consider 1-2 sessions for him and his mom, with a geriatric care manager or therapist with expertise helping caregivers. That person might be able to help his mom identify support resources that will work for her, and it takes the pressure off your friend a bit. It is basically investing in the support infrastructure of one’s family.
– What about a caregiving podcast for his mom? I’ve listened to a few and so far I think the most supportive one is from Denise Brown at Caregiving.com. No self-disclosure required for the listener, and can be listened to while walking outside (or while alone doing any activity that doesn’t require a ton of mental focus).
– Last but not least, when people are tired, discouraged, or stressed it often takes a LOT of activation energy to get them to try something new. If your friend has time to walk his mom through trying some of these, that might help…maybe they can try a few of these together.
I hope your friend’s family find something that helps!
Thank you! I like the idea of investing in your family’s infrastructure by bringing in expert help, like a geriatric care manager.
Here’s a silly question: what is the “starting age” for geriatric care?
Susannah, thanks for asking. Here’s my take on geriatrics: it is healthcare that has been modified to be a better fit for what tends to happen as people age.
The key things that happen: vulnerability of body and/or mind, multiple chronic conditions, chronic & often progressive impairments of body and/or mind, and chronic caregiver involvement.
So when to start with geriatric care…whenever those start happening! There are hale 92 year olds who are just vulnerable and mostly need to avoid risky meds. There are unfortunate people in their 50s who have a lot of all the above going on.
Of course there are medically complex younger people — let’s say aged less than 50 — who have all these things going on too. Much of the approach we use in geriatrics works for them too…a huge part of geriatrics is just having a person-centered approach to managing complexity — medical, social, functional complexity. Plus we’re good at falls, cognitive impairment, and progressive decline.
Did I answer your question? Sorry I don’t have a brief answer right now 🙂
You did answer my question – thank you! “It depends” is a fine answer.
I think the term “geriatrics” could be a stopper for people who don’t think of themselves as “old.” My own grandmother, who lived to 96 and a half (she wanted credit for the half), would say (quietly, just to me), “Look at that old lady.” And of course the “old lady” was probably 20 years her junior!!
Love that story about your grandmother!
Yes well…we have such interesting and complicated feelings about aging in ourselves & in others…which is why it’s one of the great themes of literature & poetry.
Geriatrics itself has a definite brand and image problem. Within the field there are so many good ideas for families, older adults, clinicians, caregivers, but it’s been hard to bring them to a wider audience.
This is a meta-comment, I suppose, about the subject of engagement.
In preparing for my lectures at Mayo next March I’ve been proposing that the time may be here to define a science of patient engagement, in which we take the vague swirly cloud of touchy-feely engagement thoughts and identify measures that can be understood. If I’m right, it’ll be a long-term (multi-year) endeavor, because it will touch every aspect of health and care, and it will need to be studied studied studied studied. Because without that, it’s not a new scientific field.
Here’s my own comment, pasted from FB:
Yes.
I spent the first part of this week in Cincinnati, working on a project to design a better health system for people living with T1 diabetes. More on that later, but for now I’ll share a comment made on Twitter by Kerri Sparling:
Seeing a “patient activation continuum” for the first time. Does not compute.
When asked why, she replied:
Follow #dayofdiabetes for a look at what a day in the life really looks like, from tasks to emotional responses, etc.
Understanding what triggers “activation” (and what defines activation) for different people at different stages of their lives: yes, that’s a dissertation topic.
I’d be careful not to confusion with introversion with someone who’s just a private person — these are often two different things. The original poster never said his mother was an introvert — just private, with just a few close friends, and not one who is apt to share. (Being shy isn’t the same as being introverted either, btw.)
Different people find comfort in different things when facing an imminent loss. This is more of a grief issue, I suspect, than an issue simply of support for someone who’s “private.”
I’d also say the mother has made clear her preferred support mechanism in her time of need — her son. This is the time to step up and be there for one’s family, even if it feels overwhelming. You’ll never get a second chance in these times of need.
Last, I’d recommend the mom see a therapist who specializes in grief counseling. She can get a referral from her primary care physician, or someone she trusts.
Thanks, John. This is why I share these questions publicly — to learn from expert colleagues. Great advice.
Once I read the piece I scrolled down since I figured someone would make my point, which you have. Three different things described here, with less overlap than one might thing:
– Introvert: someone who is drained by having to interact extensively with others and who more readily develops ideas on his or her own
– Shy person: someone who is anxious or self-conscious about interacting with others
– Private person: someone who doesn’t share a lot
Introversion is the most hard-wired of the three, shyness can be over come with training, and privacy is more cultural and situation-dependent.
I’m an introverted person who’s not shy at all. I’m private about some things and very public about others.
So without replying directly to your friend’s question, I’ll emphasize that it’s important to understand the nature of the person who you’re dealing with before you try to help them. In my biased view, introverts often do a better job than extroverts at understanding where people are coming from.
I am so glad you’re raising this. Participation can be daunting or even impossible for lots of people who could benefit and contribute substantially to the greater online patient/caregiver community. The group includes introverts, and generally private people, but others too — like those for whom writing isn’t a preferred or easy communication method and, obviously, those without regular access or the ability to navigate the online world.
I think the question is — how do we make the connected world accessible to all who are interested in participating or might benefit from it?
To echo some earlier sentiments, we talk a lot about actively sharing, but I think we sometime underestimate the power of lurking — still sharing *in* an experience but in a quieter way. I lurked for months before gaining the courage and desire to speak up and identify myself.
In fact, lurking was probably the most seminal part of my patient journey thus far. That’s when I realized I was part of something bigger, that other people were dealing with the same ridiculously age inappropriate things I was, that we could joke about it, and that I actually liked these people. They were funny, and they were smart, and they were witty and clever, and they were sometimes snarky and still compassionate, too. They were people I could imagine myself actually connecting with beyond merely our shared CF patient status. I liked them.
That was revelatory for me. As I’ve shared with you before, that’s what triggered my life-changing shift from hating and distancing myself from everything CF-related, to actually accepting it and trying to do everything in my power to best live *with* it.
So — lurking, reading other people’s blog posts, and questions, and FB and twitter posts, all of that is integral to this act of sharing in other people’s similar journeys. “Just lurking” is a totally acceptable form of participation. It’s during that process that you also sometimes realize that you behold information that could be really useful to someone else, and that you grow to like these other patients or caregivers and want to connect with them, as people and not just patients. That’s what made me break out of my shell.
But still, at the end of the day, some people will prefer to remain quieter and others will be more talkative and outgoing. And I think that’s more than ok, it’s beautiful and essential and the same as every other community under the sun. We need diverse citizenship for a community to truly thrive.
Beautiful indeed. Thank you, Emily!
Emily, this is a great post! You’re touching on a key concept in psychology: self-efficacy. Self-efficacy essentially describes one’s confidence in completing a specific task (e.g., confidence to post online or engage in conversations about health). The higher your self-efficacy, the more likely the task will be completed.
Albert Bandura, the psychologist who first defined self-efficacy, described 4 kinds of experiences (called mastery experiences) that can increase (or decrease) self-efficacy. One type of mastery experience is the vicarious mastery experience: watching someone else do something.
As you describe in your comment, vicarious experiences can be very powerful and should not underestimated. As you say, seeing others do something gave you the confidence to eventually do something yourself. And made you feel better along the way.
It’s so great to see psych concepts in the wild! Gives so much meaning to what academics do.
Your friend’s mother sounds very much like a friend of mine. This has been true her entire life (I’ve known her for about 40 years), and I doubt that this part of her will ever change. When we were young, we found ourselves going through similar life tragedies around the same time. My traumas always seemed to follow on the heels of hers. The pattern went like this:
* Something awful would happen.
* I would process the ordeal by phoning my half dozen closest friends and talking through it with them, over and over, until I reached a point where I could stop talking.
* When I phoned her I would discover that she had already gone through something similar a few months or a year before.
* I would be surprised, shocked that I didn’t already know, and hadn’t heard. We would then share more intimate details of our trials, and she would share her coping strategies.
Eventually there came a tragedy in her life that was so huge and devastating and public that she couldn’t hide it. Everyone (family, friends, neighbors, coworkers, her church pastor) talked about how STRONG she was, how they admired her, how they could never have dealt with what needed to be done the way she did. That was her identity by then. She was the one who coped, no matter what.
She didn’t want to talk about it. But she needed to. But she didn’t have the skills to know how to ask for help when she needed it most, she had never practiced asking for help. She was the one who helped OTHERS. Each time I had called on her for help, that was how I had discovered her hidden traumas. She revealed them only as part of helping someone else. This time, that didn’t work, since none of knew anyone who had gone through or was going through anything like her.
Something broke. She needed extra help, and ended up seeing a therapist for a while. It’s been several years now, and she’s doing well, but has a slight fragility that was never visible before. The difference I notice is that now she does occasionally bring up how she’s doing. She’s a little more open in some ways, and a little more rigid in others. Not much more open, but she talked about seeing her therapist, about steps in the emotional recovery from this huge trauma. Life goes on. She is still amazingly strong, smart, wise, insightful, and compassionate, but it changed her in a way that has altered something fundamental in how she presents herself to the world. She’s had to reinvent herself somewhat.
I think that happens to all of us. For some of us, it happens several times throughout our lives. For a few people, reinventing themselves after trauma seems to be the story of their life, and what could become fragility becomes a different kind of fluidity, change becomes a supple flexible resilience. For a few others, they fracture over and over again, and the pieces don’t go back together in a way that allows them to do what they used to do.
As Susannah and others have said, learning how a person has dealt with serious matters before can give you a clue to what they need now. If your friend’s mother is at all like my friend, as I am thinking might be the case, perhaps she could learn to help herself by helping others. Framing a support group as a way for her to share her coping strategies with others might help her accept it. Alternatively, perhaps there is someone else who is a caregiver in her community or church, among her friends, and she could be invited to help that person by just trying to reach out to them by phone once or twice a week, at least as a start. To meet for a cup of coffee every week or two?
Just brainstorming. I hope this is helpful!
Wow. Beyond grateful. I will share this with my friend and, to be honest, meditate on it myself.
+100
> Here’s my take on geriatrics: it is healthcare that has been
> modified to be a better fit for what tends to happen as people age.
Leslie, that’s the best I’ve seen on the subject. It became clear years ago that “65” was no longer “old” in any meaningful sense – the distinguishing issue is how you’re doing. “modified [for what] happens as people age” is what I meant.
John Grohol, I’d love to hear more about the difference between introverted and shy.
I think online communities need to design for one on one support and communicating in facts on other similar communities. They need warm welcomes and a supporting environment. It’s probably useful to have a small subgroup for introductions with skilled, warm, friendly, knowledgeable moderators.
After I had preeclampsia I went online lurking looking for info and similar stories and I ran into someone at WebMD mentioning statistics of recurrence. I asked for details and she guided me to a wonderful online community. She was an administrator/moderator of that forum and her warm friendship kept me going there. In time I became an intense follower of the group and found my niche, learned a lot, helped and made friends.
Unfortunately the style and brusqueness of shy people causes many to label them as trolls or dismiss their initial postings. It is a fine line and I do not have a solution. I would err on the side of including everyone and having people ready to engage one on one when needed would be useful.
Thank you, Ileana. Each of you is adding to the mosaic of understanding, deepening my appreciation for our community and for this issue of supporting many different types of people.
I shared this question on a LinkedIn group I’m part of and have been receiving some wonderful replies, many along the same lines as what we’ve been discussing here.
One new one merits pasting in:
“…I’d also add that it’s important to keep in mind other dynamics, such as gender and generational differences. And, there’s great literature on caregivers and how we can best support them – check out Steven Zarit at Penn State. http://www.hhd.psu.edu/hdfs/directory/Bio.aspx?id=StevenZarit
Finally, keep in mind that introverts self-select their social environments, which is different than people who desire greater contact but struggle to make that happen. In terms of linkages to health, control and agency over your own situation are associated with well-being, so perhaps the question is more generally how we can support people whose desire for connection and support does not match their perceived levels of connection and support.”
Note: I’m traveling (again) this week so comment approval may be slow if you are a first-timer or include links to resources. But please keep commenting!
One other thing about working with shy, introverted, and/or private people who are dealing with illness: look at this person’s network of trusted people, and try to build outwards from there. A recommendation that comes from a trusted person may be received quite differently that an recommendation from an unknown person, for example. This often means enlisting, engaging, and educating those around the patient–and that might involve a variety of approaches and media. Be careful about just pushing more at people who are trying to cope by hanging on to the footholds they trust to be solid.
A powerful TED Talk by Susan Cain on The power of introverts
Thanks!
Everyone: here’s the link:
http://www.ted.com/talks/susan_cain_the_power_of_introverts?language=en