Tuesday, June 27, 2017

Why I Advocate

Note: This piece comes at the request of the Arthritis Foundation.  I was asked to write about my experience with its Ambassador Program, and my success with one of our recent tasks.  I am honored to have been asked, and hope the following does the program justice.  For more information, visit arthritis.org/advocate/ambassador-program.

Nearly 10 years ago, I began feeling a variety of symptoms that didn’t seem to make much sense: I was exhausted and sore without doing anything strenuous, frequently weak, dizzy, and nauseous, I couldn’t sleep.  I soon learned about a condition called Fibromyalgia, but it took 4 years and a dozen doctors before one believed me and diagnosed it.  Over that time, I developed new symptoms, including skin rashes and painful swollen joints.  It took another 4 years of rotating misdiagnoses before my doctors realized that this inflammatory arthritis was part of a disease called Sarcoidosis.  These illnesses have taken so much away from me: I’m no longer able to work, I have to walk with a cane for short distances and use a scooter for longer ones, and I have to cancel more plans than I can keep.  But the Arthritis Foundation has given back so much.
It’s empowering – and invigorating – to see that even when my body won’t work the way I want it to, my mouth (and my typing fingers, when my hands don’t hurt too much to send an email) can still get things done. Not just little things – important things!

Sunday, June 25, 2017

Not a Drag

Note: This piece was originally written in response to the following writing challenge, offered by The Mighty: 

We often read comments in our community about people worrying their condition will prevent them from being in a relationship or finding love, even if that’s not truly the case. What would you say to someone else with your or a loved one’s diagnosis who also feels this way?


Back in college, I dated the wrong boy for far too long.  He seemed to feed off of every insecurity I had, and even gave me some new ones.  While I’ve mostly overcome all that and rarely give him a second thought, there’s one thing he said that has stuck with me all this time.  One thing that has become my greatest fear, my greatest insecurity.

You’re such a drag, always sick all the time.”

As a (then) English major and (later) English teacher, I focused in on that language.  He didn’t say that it’s such a drag that I’m sick all the time.  He specifically put the negative, the blame, the drag on me.  As if I could help it.  I wasn’t deserving of patience or sympathy because I was suffering; I was made to feel worse because it was bringing him down.  I was the problem.  And that was before I’d even developed the chronic illnesses I now have.  Eventually, I realized that he was not good for me (for at least 100 other reasons), and got rid of that boyfriend … but his words remained buried deep within.

Once I’d gotten rid of him, I renewed a friendship with an old boyfriend who would eventually become my husband.  My kind, caring, supportive husband.  He’d been a friend since childhood, and seen me through the highs and lows of all aspects of life … so I always knew I could count on him to be there when I needed.  Still, when I started to get really sick, my ex’s words haunted me again.