Coming Out Of the [Medicine] Closet

Each of us, at some time in our life, is confronted with the dilemma that brought me a lot of anxiety this  past week:  telling a loved one some news that we know will likely cause them discomfort, in the least stressful way we can manage.  Whether the topic is revealing sexual orientation,  a marriage that has inexplicably fallen apart, a drug addiction, an unplanned pregnancy, or (as in my case) a potentially debilitating disease, all we really want is to get the confrontation over with as quickly as possible, hopefully get our loved ones’ support, and then move on.  These moments of revelation are significant; they serve as the event that defines a “before” and “after” phase of life.  Once the news is told, we know that going back to the “before” life is forever impossible.

I spent an extended Easter weekend visiting my parents in the Cincinnatti, OH area.  In addition to simply wanting to see them again (my last visit was 4 months ago), I was on a mission:  to tell them of my diagnosis.  Although I had wanted to tell them on the phone much earlier, my dear and wise StarMan advised me to deliver the news in person.  And so, I waited for what ended up being about 5 months, during which time I gave no indication that anything was “going on”, to have this dreaded conversation.

The folks picked me up at the Dayton airport, and we chatted  about all the usual things we talk about when we haven’t seen each other for so long, during the 2-hour drive to their home.  Once there, we  watched TV together, showed each other funny videos and cartoons we had seen on FaceBook, and just enjoyed each other’s company.  The time was getting on to nearly 11PM, and I knew that I couldn’t call it a night until I had lifted this burden from my shoulders.  Finally, there was a pause in all of our laughter and chit-chat, and I seized the opportunity.

After having carefully rehearsed this moment repeatedly in my mind earlier that day, I broke the silence by a solemn statement of fact that, in retrospect, must have first seemed like another lead-in to the many jokes we were exchanging just moments before:  “I’ve had several medical check-ups over the past couple of months, and I’ve been diagnosed with MS.”   I noticed that they weren’t able to switch gears as quickly as I had — my parents were still waiting for the hilarious punchline.  So I quickly followed up by explaining that  I am now being treated for the disease, I’m doing very well, and that I haven’t suffered any sudden new disability that has prompted this diagnosis. I added that given the inexplicable things that I have had over the years (fatigue, optic neuritis, foggy thinking, etc),  the diagnosis wasn’t a huge surprise to me “and I hope it isn’t to you.”    They asked some questions, and I proceeded to fill them in on all the details and described the somewhat surrendipitous events that had lead to the diagnosis that started with a typical day at the optometrist’s office to get fitted for new glasses.  I bragged about my super-fantastic neurologist (Dr. K.), and assured them that I was in the best of care.

To my surprised relief, there were no tears.  My Mom’s face went a bit red, but both of my parents were composed, and even expressed relief of their own.  They confessed to having been worried about a lack of diagnosis/treatment since my optic neuritis attack 15 years ago. Apparently even my brother, completely unbeknownst to me,  had recently asked them about how things were going with me in a neurological sense, and all they said they could do was shrug (and regale him with tales of the bad doctors I’ve had up until now, a topic for a future post!). My folks seemed very comforted to hear that I am now on a treatment.

I know that this “confession session” will not be my last. Some day, there will be something else to tell (or to hear),  inevitably more serious than an MS diagnosis.  Such is the circle of life.  This confessional experience, however, had reinforced in me some good practices to follow when confronted with the task of telling bad news: First, don’t start off with a long story. Rather, start with the punch line (the diagnosis), state it as simply as possible, and then provide the abridged version of background/context, leaving out all but the essential details. Leave plenty of time for questions and supply, in your answers, those details that you left out in the introduction.  Be prepared going into the conversation; make sure you’ve done your homework so that you can give satisfying answers to their questions. The homework will arm you with a much-needed sense of control over the situation.

We stayed up super late that night, with my Dad googling “Copaxone” and reading up about it, occassionally asking me if I’ve had such-and-such side effect yet.  My Mom, a retired ER nurse, offered/insisted on giving my injections for the remainder of the nights of my visit. I gratefully accepted her expert assistance, and helping me gave her some useful sense of involvement and control.  The dreaded moment of confrontation was over, my family was incredibly supportive, and we all moved on by spending the next two days doing some day hikes at local parks (travel log with pictures to be provided in next post!).  Whew, the best outcome ever!

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