Last weekend, I attended a conference with about 60 of my fellow chronic illness bloggers and online advocates.

I found myself thinking a lot about my dad, and this seems to happen a lot when I am traveling for conferences.

eyetearmemeMaybe it’s because I have a lot of alone time when I’m at these events.  Maybe it’s because I started the conference circuit (begrudgingly) right after he died because my mom told me that I had to do the things that I had committed to.

Or maybe it’s because I no longer feel that being diagnosed with lupus and rheumatoid arthritis is the worst thing that has ever happened to me.

It’s hard for me to say that.  It’s hard for me to admit that to myself.

And I guess when I’m around other chronically ill people, I feel almost like a fraud.

I find myself wondering if I truly belong.

I was at a conference in November, and we all had to go around and share our stories.  I considered talking about my dad, but I just couldn’t make myself do it.  I don’t know why.

Some of the people there knew me and somewhat of what had happened to my dad, and wondered why I didn’t say anything about it.

Oddly, I haven’t really explored whether there is a community of traumatic grievers online.  I worry though.  I know there are people out there who have suffered far more traumatic losses.

While we will never truly know what happened to my dad that night, we know that there was no evidence of foul play.  But we also know that he was missing and law enforcement did nothing about it.

I feel weird sharing these feelings when I’m around other chronically ill people.  It’s not that I don’t think they would try to be supportive.  Because many of them already have been.  I just don’t want to burden other people.  Because this is a burden that is not going away.  It is a burden I will carry with me forever.

There’s something about losing someone so suddenly that changes you.  It makes you a different person.  It forces you to realize that people will never know the “before you”—they will only see the “after you.”

And I felt a lot of that when I first got sick.  I thought that no one I met would ever know the “real” me, that somehow, illness had taken away the essence of who I was.  But in fact, illness motivated me to try harder, to be a better person, and to take an awful experience in my life and use it for something good.

I try to force down the urge when I meet someone to lead with “My dad died,” as if that explains everything.  It’s as if leading with “I have lupus and rheumatoid arthritis” explains everything.  But they don’t.  Neither of these things defines me, even though sometimes it feels like they do.

I am a person with lupus and rheumatoid arthritis.  I am a person who has lost one of her parents.

I am me.  And sometimes, that has to be enough.

 

*Leslie Rott wrote about the tragic loss of her father during the terrible flooding in Michigan on August 11, 2014 in a blog entitled, “Things We Lost in The Flood,”: www.creakyjoints.org/blog/things-we-lost-in-the-flood