A chronic illness like ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) can be horribly isolating. People who are more severely ill may be bedridden or housebound. Others, like myself, who are able to get out and about can still feel different from everyone around them and emotionally isolated. The experience of living a life ruled by restrictions and limitations can create invisible barriers between you and those around you.
For these reasons (and more), the experience of meeting and interacting with other people dealing with the same challenges can be incredibly rewarding and even life-changing. Whether you are homebound and must rely on virtual communities or can actually meet others with your illness in person, as well as online, seeking out others is a worthwhile venture.
Reaching Out to My Virtual Community
When I first received my ME/CFS diagnosis, I sent a message to an online writing group I belonged to asking if anyone else there had it. I was surprised and delighted when someone responded to me! She was my age, also had two kids, and she had ME/CFS. We quickly became pen pals and have stayed in touch for the past 12 years.
A few years later, I started writing my own blog about living with chronic illness, and I was thrilled when people started reading it and leaving comments. Little by little, I got to know others dealing with the same issues, and my virtual community grew. It helped so much to “talk” to others about everything from treatment options to emotional coping. I’ve written the blog for over nine years now, and I am still amazed by the outpouring of support when I write about my challenges or joys.
Two years after I got sick, our two sons also got ME/CFS. Those were dark days at our house, and my husband and I often felt very isolated, especially when battling our sons’ schools to get appropriate accommodations for them. We felt very alone.
Gradually, I began to meet other people in our local area who also had kids sick with ME/CFS, fibromyalgia, EDS, Lyme, and other related conditions. I met others through referrals from our doctor and school guidance counselor (I gave them permission to give out my name) and from my blog and other online communities. One local mom broke down in tears during a vet appointment for her dog because her daughter was so sick. The vet happened to be one of my closest friends – she told her to call me!
Gathering My Informal Support Group
Finally, it occurred to me that I knew these other local parents, either online or in person, but none of them knew each other. I organized a lunch date that was life-changing for us all. Five of us met that day, and we talked nonstop for two hours about doctors, treatments, school issues, and being the parent of a sick child. By the end of that lunch, we were all good friends and promised to get together again.
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We soon decided our husbands and kids needed to meet. One family hosted a casual potluck dinner, and it was just as much of a success as the mom’s lunches! Our husbands were glad to meet other dads who understood the difficulties of parenting sick children and trying to balance work with a complicated family life. We moms were all good friends by now, and the discussions were just as lively and interesting as at our first meeting.
And our teens? It was a life-changing evening for many of them. They didn’t sit around talking about their illnesses – instead, they laughed and talked and played games. In short, they got to be normal kids for one evening. They knew that the others understood their challenges and limitations without saying a word. They didn’t have to worry about seeming weird or explaining anything. Some of these teens were housebound, so to hang out with other kids was an incredible feeling. Our own two sons left that night asking, “Can we do this again soon? It was so much fun!”
Since that first lunch five years ago, we have maintained our local group of families. I have tried traditional support groups but have found that this more casual approach works well for us. When we meet at someone’s house, those who need to can put their feet up or even lie down, and parents and kids have all become close friends. New families have joined our group (including some ill adults) and some teens have gone off to college (often thanks to doctor recommendations and treatment advice from the group!). The group make-up changes, but the warmth and support remain the same.
Developing Your Own Community of Support
So, how do you find other people dealing with similar illnesses? Online, look for blogs, discussion boards, and Facebook groups specific to your illness (or similar ones) and participate in them. It’s remarkable how well you can get to know people when you comment on their blogs or interact in an online group.
Finding others locally is more challenging, because most of us don’t go out much and our illnesses are invisible, but here are some ways to find others:
- Give your local doctor(s) your e-mail address, and ask them to pass it along to anyone else they see who has your illness.
- If it is your child who is sick, give your contact info to the guidance counselor or 504/IEP coordinator and ask him or her to share it with other parents in similar situations.
- Ask your friends and family to let you know if they meet others who are chronically ill.
- If you are a member of any Facebook groups or discussion forums related to your illness, post a question asking if anyone else lives in your region.
- Check local newspapers and community bulletin boards for notices of support group meetings. Even if you aren’t looking for a formal support group, you may meet someone there who you would like to get to know better.
- Check with national or state organizations focused on your illness (NJ, WI, CT, MA have active ME/CFS associations, for instance). Search for your state name and your illness in a search engine and see what comes up.
Believe me, you won’t regret making connections. These friendships have enriched our lives – and provided much-needed support. And along the way, we’ve met some amazing people!
This article, originally published on September 9, 2015, was updated on January 24, 2020.
Suzan Jackson is a freelance writer who has had ME/CFS since 2002 and also has Lyme disease. Both of her sons also got ME/CFS, in 2004, but one is now fully recovered after 10 years of mild illness and the other just graduated from college, with ME/CFS plus three tick-borne infections. Sue writes two blogs, Live with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com, and wrote an upcoming book, Finding a New Normal: Living with Chronic Illness. You can follow her on Twitter at @livewithmecfs.