Reality bites…

I saw this meme on facebook yesterday and it gave me all kinds of feelings.  I shared it and so many people posted sad faces.  I honestly didn’t share it to make people feel sad for me.  I shared it because It’s so comforting to realize I’m not the only one who felt this way.


44213259_1835721089811018_5538822775910694912_nI got the pic from Chronic Eileen, a Canadian arthritis advocate (she is pretty awesome, check her out by clicking on her name above).

I remember being in my early 30’s.  I was in great shape.  Working out and eating right after finally getting my Graves Disease under control.  I started having shoulder pain.  Thought it was related to my thyroid levels (it had happened in the past) and it would even out in about a month with a change to my Synthroid.  Sadly, a month turned into two months.  I started the journey of seeing specialist after specialist and leaving feeling like I was losing my mind. Not one doctor could tell me what was wrong with me. The pain was debilitating. My joints were swollen and red, yet my blood work was clear.  So obviously, nothing was wrong (according to the doctors).  When I asked them to explain why so many of my joints were red and swollen, I clearly remember one doctor looking at me and saying, ‘I have no idea’, before he left the exam room. Uh, thanks??!!!

Even now, seventeen years later, I’m not 100% sure what is wrong with me still.  My doctor leans towards more psoriatic arthritis now more than rheumatoid arthritis, but who knows.  All I know is that it takes me a long time to stand up in the morning and the first two hours of my days are filled with pain due to stiffness.  I want to sleep 12 hours or more a day (sadly, that is not a possibility) and I constantly feel like I have the flu. Everything is an effort…..but now, I have no illusions of suddenly being “better”.  I’ve accepted that this is my life.  It’s certainly not a life I would have chosen for myself, but I am trying to make the best out of it.  I’m constantly trying to balance being a human with being chronically ill with an invisible illness.  It’s not easy looking “fine” while struggling to make it from point a to point b on a daily basis.  If you are knee deep in it like I am, I’m sure you get it. Invisible illness can’t be seen, but it certainly is a target.

Recently, a friend of mine was diagnosed with MS.  I’ve noticed people joking with him about being disabled and/or using his MS as an excuse.  On one hand, it’s great he can joke about it. On the other hand, why is it okay to joke about it?  I even know one person who thinks he is “faking it” to get time off of work.  Seriously….this person seriously thinks they know more than a neurologist. It boggles the mind.  Is it because you can’t see his MS??   I get teased for moving slow, I get called “gimpy” and “hop along”….honestly, I don’t care, but it does make me wonder about why it happens.  Years ago, I broke my leg and had to use a wheelchair and a cane.  I was shocked at how differently I was treated.  It was like those apparatuses made my struggle more real and validated my pain in the eyes of the world.  Honestly, it doesn’t make sense to me.  My broken bone was able to heal.  My autoimmune arthritis is incurable.  I will never get better….and that is my reality.

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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.

2 thoughts on “Reality bites…

  1. Kelly, I think after 44 years I am over that feeling that I was not ill once. I have often forgotten the awful feeling that one day when I heard those awful words, you have diabetes. Thank you for your blog, it is something I should never forget.


    1. Diagnosis day is a defining moment. Over time, I’ve stopped hating it because it’s part of me now. I remember getting the call. I got off the phone and had to go see my orthodontist. I remember the hygienist asking if I was okay and then she sent the orthodontist over. They pulled me into a private room and again asked me if I was okay. I remember my face felt hot. Apparently, I was BEET red….and probably in shock. I don’t even remember driving there. It’s ironic that I waited so long to get an answer of “what is wrong” with me. When it came….it was such a shock to my system. Hope you are doing well friend!


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