Thursday, December 8, 2011

Scrapbooking My Illness(es)

You may not know, but scrapbooking is one of my favorite hobbies.  I actually have a blog where I showcase my scrapbook creations.  You can check it out here. 

One thing that I haven’t really scrapbooked is my illnesses.  The idea came from a post by Kerri from Six Until Me.  So that’s what I’ve done.  I’ve scrapbooked my own illnesses.  

I write a lot about my illnesses (obviously).  That’s how I express myself best.  But I thought it was an interesting exercise to view my illnesses through a different medium. 

As you can see from the picture above, I did add words to the scrapbook page that represent my illness journey.  These words are; “Meds,” “Lupus,” “Flare,” “Joints ache,” “RA,” and “Elbows lock”.  I also included the date of my “official” diagnosis and the phrase, “My world forever changed”. 

The pictures I’ve included are from a few of the Lupus Walks I’ve done with my aunt and sister.  The other pictures are of me possibly looking my best; both taken by my fabulous photographer friend Rachel. 

I chose the juxtaposition of pictures because, for me, that is a really big part of my illness journey.  In reality, I am a sick person, taking many medications a day and a shot once a week, to maintain a baseline of relative health, whatever that really means.  On the other hand, I’m trying to be a vibrant 26-year-old, working on my PhD.  I like going out, spending time with friends, all those “normal” 20-something activities.  It’s just that these things wear me out sooner than most and I have to be constantly mindful of my energy reserves or lack thereof. 

And yes, there are days in which it is hard for me to function, but I try to deal with those as they come and not be hyper-vigilant and worry when they aren’t happening.   

We all know that illness is a complicated beast.  And my relationship with my illnesses, and with myself, is fluid and constantly changing.  Sometimes emotions surface unexpectedly.  Things I thought I had come to accept often creep up again. 

I try to live my life in a way that gives illness the appropriate amount of time and energy it deserves.  But I think what a lot of people don’t understand is that this is my life.  We only get one chance at it.  And if I’m going to live my best possible life, I have to be mindful of what my illnesses mean to and for me, in the past, present, and future.

That’s why the “normal” pictures of me are bigger than the others.  They are on the boundaries of the page, but they have more prominence.  Sometimes it is a battle to get these two seemingly opposing forces in check.  The life I have with illness and the life I imagine I would have without.  

But you know, today, right now, those two things aren’t so different.  And I feel very lucky that at this moment, I can say that.  There are times when I know that may not be the case, but right now, as you can see by my scrapbook page, there is a lingering glimmer of hope. 

No matter what, I am who I am, illness or no illness.  I used to feel that everyone that gets to know me only in my illness life are being shortchanged.  But that’s not really true anymore.  In fact, I think, and hope, that what they are actually getting is a better version of me.

I hope that this post gets your own creative juices flowing, because I’ll be asking for posts just like this one for the next edition of PFAM.  Stayed tuned for that.  Details coming soon.


  1. Leslie,

    I haven't been writing or commenting for a long time, but I have been lurking, reading your posts and keeping up with your life through your blog. I used to scrapbook regularly, bu am no longer able to do it. I have tons of expensive supplies that I would love to donate to you or someone you know. They are almost all Creative Memories stuff because I used to sell that. I am not looking for any money, although depending on the cost to ship I might ask for that. Would you have any interest? If so, please get in touch and I can let you know what I have. I would love to see it all go to a good home. It is hard for me to look at it when I can no longer do it.

    Maureen from "Being Chronically Ill is a Pill" blog

  2. I'm a scrapbooker too and I did a page about health a while back. Partly I did it because I realised that although I spend a lot of my life with crutches and sticks and wheelchairs, they were hidden in all my pictures that I used. So I dug some out and did a page explaining Fibromyalgia using the pics. Then I used some packaging from my meds as background and put a booklet in a slot behind.

  3. I am a scrapbooker also. I have not thought of doing a scrapbook about my illness. That is a great idea. Thanks for that! You do nice work!

  4. Pondering ...

    Such a thought-provoking idea, I need to figure out how, exactly, I can do this.

    Thanks for the challenge, Leslie! :-)

  5. Maureen - I will try and send you an e-mail in the next few days.

    Mininglibrarian - Sounds cool!

    Adrienne - Thanks!

    Aviva - I'm anxiously awaiting to see what you come up with.