Why, yes, you guessed it (or maybe the Walking Gallery jackets gave it away)! This is one more post that was inspired by the Partnership WITH Patients Summit. This will be the last PWP post for a bit (my brain is bubbling over with other posts, and I can’t let October slip by without at World Mental Health Day post–even if it is a late one). I have talked in other posts about the need for better representation of patient stories, the importance of owning your own experience as a patient or caregiver, and the opportunity to transform painful experiences into passionate advocacy. Today, I’m going to talk more about how online relationships can be a true, genuine, powerful source of support and caring.
So many times, I hear people who are affected by serious illness–both as patients and as caregivers–talk about feeling stuck and isolated. Their health or their responsibilities make it hard for them to attend church or support groups, or even to catch lunch with a friend. One person I met at the summit told me (as you can hear in this interview he taped with me), “My friends think of me as a 50%–it’s 50% likely that I’ll show and 50% likely that I won’t make it.” Serious illness often creates a financial drain for families, so spending money for recreation or connection can feel out of reach as well.
If that rings true for you, then it might be time to consider looking for support online. Now, since you’re reading this blog, you may already be using online resources. But I know that many people, especially when it comes to health concerns, are worried about using the internet. Here are two concerns I often hear about using online support, and my response to them:
- I am worried my privacy will be compromised. My response: I am a huge fan of people showing up as genuinely and truthfully as possible online, because our real voices, faces, and stories are a powerful force to push back against stigma. That said, I know that not everyone has the luxury of being completely open online. If you are truly concerned about your privacy, because of an employer, family members, or insurance coverage, then use an alias online. You can create an email address for your online connections that is not associated with your name.
- What if people give me bad information?My response: There is certainly some need to be cautious online, and when it comes to decision-making, you always want to work as a team with your trained, licensed health care provider. However, my experience has been that most folks in online support communities are sharing their own experiences–and they’ve got some good survival tips to share.
Oh, and then there’s this one: But how can you know that the relationships you are building are genuine? Aren’t people online being fake? And my response to that is to ask you to look at the picture to the left. These are real people–all of whom I have interacted with in various online support and education communities, all of whom were summit participants. Only one of them lives anywhere close to me, but when we were in the same space, we connected as though we were friends from way back. That’s because the foundations we laid in the various online forums were the foundations of genuine relationships.
One of the driving goals of the summit was to encourage patients and caregivers to connect, to speak up, to discover and use the power that you have within the medical system. Because of that, and because there is some wonderful support from amazing people that is available, if you haven’t tried it yet, I’m encouraging you to think about checking out some online support. If you don’t know where to start, feel free to contact me and I will be happy to get you pointed towards some of the communities I know of.
Image Credit: Photos are my own.