This blog was inspired by a post by Leslie on her blog, Getting Closer to Myself, called “Time Is A Luxury We Don’t Have.” Thank you for the inspiration!
Since I read that post, I have been thinking a lot about why I started this blog. I think one of the main reasons was to help inform the families and friends of people suffering through lupus and similar illnesses what it’s really like.
In a sense, I guess I’m not worried that people will forget me so much as they will forget my experiences – and that includes me. Between the lupus fog and the fact that memories fade or change with time, I would never be able to give as accurate an account of what today was like as I can today itself.
What we experience is important. The day to day struggles are as key a part of our illnesses as the lab tests and medications and so on. If we let people forget our experiences, it’s almost like they forgot us – because without an understanding of what we’re going through, they can’t completely understand who we are.
That being said, I do wonder if people will remember me… and if they do, how will they describe what they remember? Will they remember me as the girl that was sick all the time? (Or, as was implied by a rather rude classmate the other day, “say I’m sick [because I don’t look sick].”) Will they remember me as someone who started a program with them – but was gone so much they can’t remember if I finished it with them too? So many people don’t even know that I’m ill – I wonder what their opinions would be – and how they would change if they knew how ill I actually am.
I guess there’s really no way to know these things. In general, I’ve found that people react in three main ways.
they freak out and disappear
they freak out about how they had no idea and try to become as helpful as possible (sometimes almost overly so)
they pretend like they never gained this knowledge and nothing has actually changed
I’ve just slowly started sharing this blog with people that actually know me personally in the old-school, non-internet sense of the word. I guess I’m a little scared to see their reactions, because so few people have actually heard about my illness with the kind of frank honesty that I’m more willing to put down in words here. In opening myself up to them that way, I’m changing their opinions of me and only time will tell how that will affect our friendships – and, ultimately, how they remember me.