Why all the silence?

Sometimes silence is golden, other times it’s worrying, sometimes it’s broken.  My silence in recent months has had a few readers worried.  I’ve been caught up in the busy-ness of a new job, research projects, and just trying to keep up with myself.  A lot has happened since my last post, 6 months ago.  I won’t go into all of that now – look for new posts in coming days.  But again I’ve been prompted to write out of necessity.

Two silences have been broken – the one on this blog and one from an old friend.  After several years of hearing nothing from one of my oldest living friends with CF, I got an email from him. We’ve talked, and caught up some and have committed to keeping the connection open.  I hope that he will want to contribute his stories and experiences to this blog at some point (Please BB?)

Aside from this, the issue of silence has been on my mind lately.

Recently, during a run to the local Apple Store my husband was introduced to a young, 18-ish woman who had CF.  The woman who introduced them was a family friend, she was hoping that I was there too because this woman had never met an adult with CF that was “doing something with their lives.” I think she meant someone actively involved in work, family, travel, and other aspects of life.  The young woman was quiet, she did not say much about herself or having CF.

Of course, this frustrates me.

I have to ask –  What are the doctors telling these young people or not telling them, as the case may be, about what to expect as an adult with CF? Why all the silence about living with CF? Why aren’t young adults exposed to the diversity of life choices, experiences, and possibilities that people like me have to share? Why are doctors talking more about all of the possibilities?

Why don’t you talk more about having CF – this is the question that my husband asked me after meeting the young woman.  If I were you, I wouldn’t be afraid to say, “Hey look at me. I’ve got CF and look at what I’m up to?”  My first response is to say that I have never talked about having CF very much.  It has always been a close friend and need to know kind of thing. I have never wanted it to be the thing that defined me – that people know or remember about me. When I was younger, I worried that the other kids would make fun of me. That classmates would think I was weak, different..sick. As I have gotten older, not letting people know has had interesting consequences and from time to time is a liability.  I cough, frequently.  If you didn’t know better, you’d think I was sick all the time.  People do, and I let them.  Sometimes they comment, saying “still got that cold” or “can’t shake that cough.” Rather than just saying, I’ve got CF, I will often avoid what I think will be a longer conversation by telling people that I have asthma and allergies.  My symptoms are not unlike asthma and I do have allergies, but it’s not the same. In graduate school, I was hesitant to tell most of my professors about my health because I worried that they would feel sorry for me, treat me differently, or give me special treatment.  Now, I look back and wonder, what difference would it have made?

I haven’t figured out exactly how to handle this issue in my current job.  My health is in a different place than it was when I was in graduate school.   Everyday management and recovery from flares are much more complicated and time consuming than they used to be.  The reality is that I can’t do everything that I used to do (most people, healthy or not, can not do everything at age 35 that they could do at age 25). And, I am tired. I have told the people that I think need to know, but maybe everyone in my department needs to know?    Will my slow down and CF care needs mean to my career advancement? Hmmm. What protections do I have?  Oh, the questions of a thirty-something…