Why It's Hard to Share Your Story With Illness

I discovered pretty quickly that I wasn’t equipped to handle the reaction I received after sharing my diagnosis of lymphangioleiomyomatosis (LAM) with a few people. I was still processing the news myself about this rare and incurable lung disease and didn’t really have time to decide who to share my diagnosis with and how much detail to provide.

I’ll never forget the look of horror on a neighbor’s face when I mentioned the future outlook of LAM to possibly include a lung transplant. When I told one friend about being given five to 10 years of life expectancy (before I found out that it was more like 20+ years), she cried and then demanded I seek a second opinion. Then there were the canned responses from a few loved ones like, “you’re in our thoughts” and “we’re thinking of you,” which may have been well-intentioned, but lacked substance and sincerity.

All those expressions of shock, grief and feigned concern started weighing down on me and I couldn’t make any progress in dealing with my own emotions when I was so burdened with everyone else’s. So, I reigned in all the talk about LAM.

The thing about sharing your story is that it’s your story, and you’ve got to be in charge of deciding who you trust to share it with, and how much of it you want to share.  

It took me a very long time before I finally got in the driver’s seat again with my story, and even then, I took things very slowly. I started with a trusted group of friends and family and would share a little bit at a time to test the waters. Depending on people’s reactions, or if they had questions, I’d share a little more because I realized that not everyone is comfortable with or even interested in the details. And I respect that.

Even within that trusted group, I was only comfortable sharing intimate details of LAM with a select few because delving deep is a very uncomfortable, messy experience, that leaves you feeling vulnerable and raw. Perhaps the worst feeling is when someone isn’t capable of offering you what you need in that space, whether it’s a shoulder to cry on or just an empathetic ear. That’s why who you choose to take the deep dive with is such an important decision.

The reactions I get still run a gamut. I’ve had a few people tell me that I need to think more positive thoughts as though somehow my attitude could control the progression of LAM.  “It’s mind over matter,” someone once said. Perhaps he was suggesting I should consider denial. Then there was the friend who became a LAM expert and started sending me emails on LAM-related research, news and events in order to keep me updated. I felt like she wasn’t confident in my ability to stay on top of my own disease. Another friend pointed out that maybe this was her way of coping. Some have been dismissive about the seriousness of LAM, commenting on how I look like I’m doing fine. I suppose this is not an uncommon reaction for someone whose disease is not obviously symptomatic.

Some people have offered unsolicited advice on how to improve the symptoms of LAM and I have to say, I’m pretty open to trying anything that doesn’t have irreversible effects. In case you’re wondering, I’ve tried abdominal breathing, yoga, chia seeds, reflexology, journaling, mantra recitation, fish oil, self-help books, and long walks.

Once in a while, I’ll come across those who surprise me, with follow-up questions about how I’m coping, or whether I’ve told my children, or if there are clinical studies and trials for a cure. A mom at my daughter’s school asked if there was a foundation that she could donate to when I told her about LAM. Occasionally, I’ll come across someone who has their own story to share, like the woman who told me about her young nephew’s battle with cancer, or the friend who couldn’t conceive a child and had to eventually grieve that loss. I am filled with gratitude and am honored to hear those stories because I know how hard it is to share.

For every reaction riddled with judgment, horror, or awkwardness, I have many more positive and compassionate ones. To be honest, are those other initial reactions so bad? Maybe they’re just well-intentioned thoughts from people striving to find a connection, or a reflection of how they cope. I don’t think empathy comes easily or “on-demand” for a lot of people, and in our busy and distracted lives, it takes an enormous effort to shift gears in order to tune in to someone’s emotional cues. I’m in no position to judge someone’s emotional ineptitude when I’ve been known to smirk at the most inappropriate times in reaction to unexpected news. So, I get it. Being on the receiving end of the reaction has taught me a great deal about tact and mindfulness, and I hope it carries over in times when I’m called upon for a little empathy.

I’ve loosened up the reigns these days, and often share an abridged version of my story where I deliver a quick fact-based review of LAM when asked about my disease. For the trusted and empathetic few who can handle the weight and can stand being uncomfortable, I take them on a deep dive into my journey of living with this disease. Most people fall somewhere in between.

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Getty Images photo via DragonImages