Weekly Inspiration: Find Your People

When you live with chronic illness, one of the most difficult aspects can be the loneliness and isolation. When you have an invisible illness, like ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), fibromyalgia, EDS, Lyme disease, or POTS, you can feel even more isolated, even (or especially) when you are among healthy friends and family. The solution is to find your own group of people who "get it," who understand exactly what your strange life is like because they are living a similar one.

In the almost-20 years since I first became ill with ME/CFS (and later, Lyme), I have found or created my own community of other patients, both online and locally. These various groups are my safe space, my comfort zone. They are where I "go" (even virtually) when I am at my worst and can't manage interaction with healthy people. They are also the people I turn to when I want to share my victories; the only people who can truly understand the exhilaration of a rare social outing or being able to take a short walk without getting sicker.

It all started with this blog, way back in 2007, when I began writing about my own experiences with ME/CFS, just to help process what I was going through (by then, both of our sons had ME/CFS, too). I was surprised and thrilled when others actually read my blog and began to leave comments, sharing their own experiences! Some of those early commenters here on my blog have become close friends over the years.

By 2010, I had met, heard about, or interacted online with a few other parents of sick kids in my local area, so I decided to plan a lunch where we could all meet. This was a life-changing afternoon for all of us and the start of our local support group, which now includes about 40 different families in our region. That first "mom's lunch" led to a family potluck (the start of a tradition), where our husbands and kids met also, and a few other local families joined us. That evening was just as life-changing for the group of sick kids, all isolated and many unable to attend school or play with friends, as it had been for us parents to meet. Since then, our local group has continued meeting several times a year for weekday lunches and weekend potlucks. Besides understanding, support, and the chance to trade advice on treatments, doctors, and school accommodations, we have developed lifelong, cherished friendships. We are now meeting on Zoom for the time being, but those Zoom meetings still provide a wonderful opportunity to bond, support each other, and share information.

Then, in 2011, I wanted to connect even more parents of sick kids (who have some very complicated and challenging roles), so I started the Parents of Kids and Teens with ME/CFS and Related Illnesses group on Facebook. That group has now grown to over 1600 members from all over the world, and I have turned over its daily admin to other parents. But, the group still retains its original focus on kindness, compassion, and support, with parents who are not only understanding of others' situations but who can offer loads of hard-earned experience in all kinds of situations. The collective knowledge of that group is way beyond what most medical professionals can offer!

There are lots of other groups online that I have joined and participate in, too. I list many of them, plus additional resources in New Online Groups for Teens and Parents (and others, too!).

And to find locals in your own area, try posting in an illness group to find others who live locally. You can also ask your doctor (or the school counselor, for kids) to pass along your contact info to other people/families with similar diagnoses.

Finally, you can leave a comment here on my blog or follow me on Twitter, where there is a huge chronic illness community, or "like" this blog's Facebook page, where we have a kind and supportive community growing as well.

I cover all of this in more detail in my book, and I'll end here with one of my favorite quotes that also appears in my book:

"“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.” 

        --C.S. Lewis