Congratulations you’re sick…

I saw a news story that Ted Cruz (Senator from Texas) met a woman living with Multiple Sclerosis.  In his attempt relate to her, he congratulated her on her struggle living with MS.  Congratulated. Her. For. Living. With. MS.  Now don’t get me wrong, I am pretty sure he meant he admired her strength for dealing with the disease.  At least, I hope that is what he meant.  Could you imagine someone congratulating you on living with a chronic disease?  I could see it now….getting those Congratulations banners and balloons from a party store to hang in the living room of a person diagnosed with MS, RA, Lupus, Diabetes, etc.  After 25 years you’d get a gold watch or gold cane! Could you imagine?

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on your chronic illness!!!

 

I’m not slamming Senator Cruz, but I think he is the perfect example of the fact that people don’t know how to speak to someone living with chronic illness.  I mean, I’ve had people tell me they admire me, pity me, don’t believe me (because I don’t look sick), and my favorite, “I think I have that, too.”  Honestly, I the thing most people living with chronic illness want to hear is “How are you?” and then the person asking actually listens to our answer (without judgment).

Today my hand decided to try to make life difficult with serious pain and swelling.  By the end of the work day, I couldn’t close my hand around a pen to sign my name.  I literally could not do it.  It was locked and not moving.  I panicked and asked the guy next to me to sign my name. I was morti I then sat through a meeting with ice on my hand to try to get the swelling down before driving home.  It’s a struggle that I really don’t want to be admired for or God forbid pitied for.  I don’t ask for help for so people can feel sorry for me.  I ask so I can get things done quickly and move on.  It’s a struggle that I just want people to accept as being a part of who I am.  It doesn’t define me, but it is something I can’t ignore. I can’t make it go away, no matter how much I hate it.  I can only accept  it as one part of me and keep trying to move forward.  No congratulations needed.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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