While I am never lonely these days, with a full house and often wishing for some solitude, I do sometimes feel alone in the sense of feeling like no one else could possible understand what I am going through or what my life is like. I am fortunate to have some amazing, loving friends and family, but with this crazy illness, I can still sometimes feel alone in my unique situation.
Then, as Jonny explains in his talk, I reach out via the internet into "the void," and I find my people. I get the understanding, compassion, and camaraderie that I need.
Of course, in my case, I am not just reaching out to the worldwide web indiscriminately but am reaching out to the online chronic illness communities that bring me so much comfort, support, and joy. In the past 17 years since my diagnosis, I have slowly, gradually found--and in some cases, built-- these communities, and they are now someplace where I can go, at any time, to find others like me who get me ... and not feel so alone anymore.
You can be a part of these loving, supportive communities, too (it takes a bit of trial and error and caution, as not all chronic illness groups online are supportive and tolerant). Here are some that I've found along the way.
On Twitter, you can connect with my Twitter account (which I use exclusively for chronic illness; I have another for other stuff), then look at my connections and connect with them yourself--it's a whole subset of Twitter devoted to people like us, living with chronic illness.
On Facebook, you can "like" this blog's page, and you will find a caring community there, where you can--as Jonny explains above--interact not only with me but with each other. I try to do daily #GratefulToday posts (on Twitter, too), where you can build your gratitude muscle by sharing what you are thankful for, plus sharing stuff from my own life, interesting or inspiring things I find elsewhere, and opportunities to just share how you are today and what's going on in your life.
And there are LOADS of Facebook groups, many specific to your illness and whatever other interests you may have. There are literally hundreds of groups just for ME/CFS alone. I have listed a few of my favorites, with tips on where to find more in this post on Facebook groups.
Keep in mind it may not just be communities for chronic illness that will help, but any kind of interest you have: knitting, reading, TV and movies, photography, and more! In addition to my online socializing in the chronic illness world, I am also a member of a bunch of groups and communities focused on books and reading, since that is a passion of mine.
Where have you found your people?
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