Listen to a reading of the article here.
During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my current state of health. Relationships inevitably suffered; as I became withdrawn and self-focused out of necessity. Trying to figure out why I could hardly stand or walk became a full-time job, my body a guinea pig for different diets, supplements, medications, and mantras. It was a painful discovery to have friends once held dear with many fond memories shared, disappear. Even more confusing were the ones that stayed who were critical or skeptical, and didn’t recognize or respect different access needs.
Living with a chronic illness while you are young, especially, becomes a polarizing factor with others your age who aren’t sick. Relating to my lifelong friends, who are juggling both motherhood and careers, is often a painful reminder how my life feels suspended in time. Making new friends becomes more complicated too. When someone inevitably asks, “What do you do?,” I don’t know how much to disclose, or whether I want to. “I’m hoping to heal my body” would be met with a lot of confused faces. I have begun to dread this question. ME can strengthen relationships too, but I know this unfortunately happens much less often. Break-ups and divorce are a common fallout from the stress, lack of understanding, and change in dynamics a chronic disease brings.
A strong sense of disconnection and isolation is all too common in ME; finding a new means of connection becomes necessary. Finding myself in this place, I emailed a local ME support group in Toronto. I received a reply informing me the group was cancelled because members were too sick to attend. Sadly, support groups for us tend to disappear almost as soon as they get started. This is because they’re usually coordinated by someone with ME. In fact, when I sent out my initial inquiry I had my own doubts whether it was a realistic weekly endeavour for myself. There is also the impending stress of pushing myself through a meeting if I do attend, and the dreaded recovery afterwards. Although ideal, in-person support wasn’t a viable option anyways. As a whole, the ME community faces a lot of barriers to connection due to our physical access needs. Let’s pretend that all of our accommodations were met in an ideal world— it would serve those of us less severely affected on our good days, with complete exclusion of those most severely affected (that’s at least 25% of us). A wholly inclusive or sustainable support group is impossible due to the severe disabling spectrum of this disease. That’s probably why the only ME support groups that I know of are online, even when I live in a city of 2.8 million people.
Online We Unite
These are the reasons why ME online communities have become a lifeline of connection for us all. They are most accessible means of getting us together, where interaction is paced, flexible, and we set our individual limits. The weight of isolation, emotions, logistics, traumas, fears, anxieties, and pain are held in fellowship. This ground-level understanding welcomes our whole selves without shame. Having our experiences validated brings hope, and cultivates resiliency. We find that sense of belonging and unity, from our beds, from different countries, across oceans; holding hands in spirit. Online communities are also incredibly helpful for family members and caregivers, who attend to and bear witness to our suffering everyday. It is awful circumstances that bring us together, but the support I see from each other is beautiful. The power of a supportive online community cannot be overstated enough. Without this, there would be no way for us to assimilate and lobby for change.
Those Out of Reach
You cannot have this conversation, however, without discussing socioeconomic barriers to connection. We need to acknowledge that accessibility to online community is a privilege. Unable to work or generate an income, those living with ME are at an extremely high risk of living below the poverty line. ME can and does make people homeless, furthering their oppression. Healthcare, housing, and food access can be impossible for so many, never mind internet access. What about those living with ME in isolated rural communities? Those isolated and most marginalized are the furthest from our reach. We have no idea how many people are faced with these circumstances; it’s unknown because it’s never been studied. Realistically, they probably haven’t even been diagnosed by an ME literate doctor in the first place. ME is the epitome of a social justice issue.
What Can Connection Do?
Our connections are one way of optimizing each others’ security, and access to safety. During these times, especially, when natural disasters are striking our planet increasingly hard. (More info here). Let’s continue talking to each other and finding ways to make online spaces more inclusive and accessible for everyone. Let’s continue shamelessly sharing our inner worlds so no one suffers alone. Participate in the upcoming Unrest “Share Your Story” project. Tell your story and Why it’s Time For Unrest in 250 words or less. You can read more about it here. We can use our privilege of access to connection to create change for those who don’t have this access. Social media is a powerful tool, and we can bombard it with our voices and campaigns so they can’t be ignored. You can also recruit abled bodied allies to help do the footwork with you. Meet up in-person or email your local government representative about the lack of ME funding, treatment, and need for policy changes (examples: UK ,US, Canada). Let’s use our connections to each other propel and sustain this movement, and keep the conversation on ME going.
A Question for You!
What are ways you create meaningful connection in your life? We would love to hear in the comments section below.
Looking for more info on Support Groups?
Online Support Groups
My Patient Match
Daily Strength CFS group
+Support Groups CFS
Emerge Support Group (membership-based service)
Facebook Support Groups
#MEAction New Patient Support Group
CFS/ME/Fibro Housebound Support
Chronic Fatigue Syndrome Support and Wellness
Chronic Fatigue & ME Self Help Group
Myalgic Encephalomyelitis Global
Phone Support Group
Solve CFS Weekly Phone Support Group
The group’s Facebook page describes other tips and guidelines for joining the weekly calls. A typical call runs 1-1.5 hours, but participants can join for a shorter period.
Is there a support group not listed above that you really enjoy? Be sure to share it in the comments section below.
6 thoughts on “Finding Connection within M.E.”
For years I’ve gained support through online groups for PwME, first through Yahoo groups then through Facebook groups. As time goes on (nearly 18 years into being ill) and as I age (now61), I’m finding online communication more and more taxing. I’m very isolated as it is, I live alone and can barely cope with a cleaner/help coming once a fortnight. I do have family close by who I see about once a week. I worry about the future as I struggle daily and can’t cope with the over-stimulation of in-person help.
Sorry to hear this Alison. Your situation sounds difficult right now. I’m glad you have family close by, and hope they are a source of support for you.
Thanks Christina, it’s difficult to know what to do for the best.
An important link for me and many others is Cfidsselfhelp.org. It is an online course ( free if self paced, $20 if done with a group and moderator) that helps you manage symptoms and gain some control over your illness. After this introductory course, you can take other courses : Living Your Plan, pacing, logging, etc. There is an alumni group also, if you want to stay connected to the friends you meet online. The website has many free articles and forms that are useful. Through taking the courses I have made ( in persin) friends with pwme in my area, and online friends around the world.
Being a volunteer coorganizer for two #MillionsMissing events and getting involved in Congressional advocacy as well as ME/CFS research has also helped me connect with other pwme. These relationships and this work adds much to my quality of life! I was mostly housebound, but was able to participate in conference calls and show up for meetings by careful planning, with some expected payback. There are great tools and mentors for people who have no experience with advocacy right here at MEAction. net.
Thanks for sharing!
Excellent article that I can relate to.
A huge “Thank you” for acknowledging my group Myalgic Encephalomyelitis Global. We fully support #MEAction and Unrest.
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