Emma - "I am a person, not a label"

Emma decided not to share a photo with her story, due to the stigma she still experiences on a daily basis.  But I felt that by sharing her story she was making herself visible in a different way.  Don't forget, stories can also be shared anonymously at the main blog: Visible Invisibility. This post will be reproduced there too.

I can't remember a time when pain didn't take hold of some part of my day, as a young child I would think up excuses not to do sport at school just because it hurt too much to run, that or I'd fall and trip causing yet another broken arm or leg.  You could say it was clumsiness, others may say it was Dyspraxia.

I was forever writing poetry in my teens one particular line I will share with you all "this young girl remains in bed all day and night and week and month, ears burning from the radio and eyes on fire from the day light, tucked up in her bed, tucked up like the invisible disability she is having her life stolen by".

In my late teens they - the medics that is - decided to add some labels to the symptoms, Chronic Pain, Arthritis, ME, PTSD, Bipolar, yet although this explained some I still maintained I am a person, not a label.  A few years later Keratoconus, Mytopia and Macular Degeneration added to the mix, well they explain to a point the visual stuff.  Then, a while later a white stick given, for the days when my hands don't lock and find it too heavy to roll around, legal blindness confirmed and a cataract too.

Yet in spite of it all I am married coming up for my 2nd wedding anniversary, about to graduate with a BA Hons in Social Care, and determind not to let my health rob me of even more of my life.  Just some days I wish I could crawl back to bed and hide from the world, yet others like today I am able to share a glimps of my world in the hope others don't feel as isolated in theirs.

Amy Marie

Amy writes:
I'm sending one picture of me in a flare, on a really bad day.  I'm also sending one of me looking "normal" and smiling with my invisible illness.

I have never lived a day without pain.  I remember being as young as four years old and crying, asking my Daddy why I always hurt so bad.  No one came up with any answers, though.  It wasn't until I was 15 that I was diagnosed with my first chronic pain condition, fibromyalgia.

About four years ago, when I was 26, I was diagnosed with Epilepsy, which has explained a lot of other mystery symptoms I have had.  A little over a year ago, at age 28, I was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that causes me severe chronic pain, joint dislocations and subluxations, GI problems, fatigue, TMJ dysfunction, abnormal scarring, and it gives me a propensity to develop osteoarthritis, osteoporosis, and degenerative joint disease all earlier than other people.

I am now 29 years old and use a snazzy shiny red walker.  I am a lot more than just my illness, though.  I graduated with honors with a Bachelor of Science in Business Administration-Accounting and a minor in English.  I am an avid reader, writer, pen paller, and blogger,  I am addicted to Twitter and Facebook and use social networking to spread awareness of Fibromyalgia, Epilepsy, and EDS.  My dream is to be an accomplished writer.  I've been winning writing awards since I was eight years old and couldn't imagine going a day without writing.  I still have mystery symptoms, and still am searching for the cause.  I plan to do a lot of Fibromyalgia education and awareness work from home on my computer on the FMS and ME/CFS Awareness Day, May 12th. 

 

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