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How Joining a Rare Disease Support Group Helped Lighten My Load

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I was diagnosed with a rare lung disease that almost exclusively affects women at the Cleveland Clinic a few years ago, and about an hour or so after the crash course on lymphangioleiomyomatosis (LAM), the specialist told me about a closed support group on Facebook. I could hardly process the epidemiology of this disease; connecting on social media with other LAM patients was the farthest thing from my mind.

Almost amusedly he said, “I’ve heard they’re a fun bunch of ladies who call themselves ‘Lammies,’ get it?” My husband chuckled because apparently he got it. I wasn’t quite prepared to transition from the bad news of my diagnosis to light-hearted humor, so I gave them both a blank stare as I envisioned women over-sharing personal and banal details of their lives online. Passing judgment can come easily when you’re in a dark place.

A few weeks later, despite my reservations, I asked to join the closed group on Facebook, in part because I was genuinely curious about the “fun bunch of ladies,” and also because I was starting to feel a little lonely in my dark place. Living with a rare and progressive disease that only affects an estimated 4,000 women worldwide can feel very isolating, not to mention burdensome, so I thought I’d give social media a try in hopes of lightening the load a little by connecting with others through shared experiences of LAM.

Within minutes of introducing myself to this closed group, I was warmly welcomed by women from all over the world including Norway, Canada, Mexico, and Australia, to name a few. After the introductions, I did what I usually do with my public Facebook persona, which is hang out on the sidelines, scroll through posts without actually connecting with anyone or adding anything of my own.

While lurking, I got to learn a lot about Lammies as they candidly shared their struggles, joys and everything real in between about their lives, which is often times missing in the public Facebook space. There were posts about relationships, struggles with coping, concerns over medication costs and their side effects, unusual symptoms followed by “is that normal?”, requests for prayers after surgeries, lung transplant announcements, updates on clinical trials, and so on. There were also posts about gratitude, inspiration, and encouragement. These Lammies left no stone uncovered when it came to raw and honest discussions about all things related to LAM. And while I didn’t know any of these women, I knew their stories well because they were my stories too.

What moved me the most was how fierce these women were in their support of one another, as was evident in their quick and generous response to any post, at any time of the day.  

I continued hanging out on the sidelines for a while, absorbing all that was being posted, but offering very little of my own experience. Looking back, I think it’s because I hadn’t quite made the transition into the “acceptance” phase of my diagnosis. Posting advice or sharing an experience would have meant I was one of them — a Lammie — and I wasn’t ready to take on that new identity quite yet.

That changed when I had my lungs collapse back to back and was hospitalized requiring surgery. There was no denying my disease after that. So, I decided to post what had happened and almost immediately there was an immense outpouring of empathy and compassion in the way of prayers, well wishes, and shared experiences. I followed up with post-surgical concerns and received just as many responses with advice and feedback.

When it comes to having a rare disease, I find myself constantly having to explain the whys and wherefores of LAM and even after that, I often wonder, do you really understand what I’m going through? But with Lammies, I felt a natural sense of connection, and I remember thinking to myself as I read the responses to my posts, they get me! Perhaps more than that, I finally started feeling like I belonged to this group.  I am a Lammie after all.

I think we’re all hard-wired with a need for belonging and connection with others. Isn’t that what communities and tribes are all about? That desire is especially true in the face of a rare disease where so many of us feel alone and overwhelmed, and are often reluctant to share what’s happening in our lives for fear of not being understood or taken seriously.

I’m grateful that my rare disease has an online support group and that it is in fact a bunch of fun ladies. I’m a little more active these days on the Lammies Facebook page. As comforting as it is to receive advice and support from this group, it turns out that it’s more rewarding offering it up to others. And that definitely helps lighten the load of living with LAM.

                            Follow this journey on My Life with LAM

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Getty Images photo via StockRocket

Originally published: February 23, 2018
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