Sorry for smiling….

Recently, social media has been buzzing with the warning that the government will soon be using social media tracking to crack down on disability fraud.  I wouldn’t say this is surprising.  People have been spying on the disabled for years.  Growing up, I always heard how people “faked disability” to milk the system.  My family knew a few people who were on disability but only one of whom was “really disabled”. Honestly, I grew up thinking people who weren’t in wheelchairs must be faking their disability…..oh how I have grown.  I’ve learned the difference between knowledge and judgment.

An article that really got me was in Forbes:

“A new policy proposal by the Trump administration calls for the surveillance of disabled people’s social media profiles to determine the necessity of their disability benefits. The proposal, which reportedly aims to cut down on the number of fraudulent disability claims would, monitor the profiles of disabled people and flag content that shows them doing physical activities. When it comes down to it, the policy dictates that disabled people shouldn’t be seen living their lives for fear of losing vital financial aid and, possibly, medical care.

The administration has been working closely with the Social Security Administration in an effort to reduce false claims believing that social media holds a cache of information regarding eligibility of Social Security Disability Benefits. They believe that by monitoring the social media accounts of disability benefit recipients, they can root out false claims and reduce the overall amount of money spent on the programs” (for the complete article click here: (Forbes Magazine Online 4/15/19)

They can “root out false claims” by following someone who is on disability.  Now I will say, I am not on disability. I have many friends and family members who are currently on partial and/or full disability and most of them have social media presence.  Each and everyone looks very different from each other.  Some use mobility devices, some do not.  Some have a visible disability, some do not.  So I have to ask, what does disability look like?

Disability image
Photo Credit:  Council of Europe   http://bit.ly/2KUuwMD

Are only people in wheelchairs allowed to smile on social media from now on? What exactly constitutes someone “looking or acting disabled?” There is such a misconception regarding what qualifies as a disability, it’s mind boggling.  Everyone who is NOT disabled feels qualified to decide who is disabled and who is not.  I am not on disability, but I have a disability.  I, like many others who struggle with diseases/conditions that ravage our bodies, have a full life.  I have times when I am sad, struggling and down.  There are times when I do post photos of my swollen joints or the injectible drugs I have inject in my body.  Other times, I post photos of my travels, my dog, quirky things that happen during the day, my dog, food, books I’m reading, my dog, beautiful flowers, my dog & cats…. you get my point.

Being disabled doesn’t mean you can’t do some light yard work or carry groceries.  It means you an do those things then you suffer the consequences by losing 2-3 days of functioning afterwards.

Although I am not disabled, I never post the reality of my life with autoimmune arthritis in full.  I believe research has shown that most people only post the positives in their life on facebook anyways.  I looked back at my posts and related them to what is going on in my life….It’s official.  I lie about, or hide my reality, instead of sharing it with my friends and family.

-I switched to a new biologic drug.  The first 2 months was so painful that I wanted to die. When I finally took my 2nd dose, I began to see some relief…..then I broke my foot.

This is what I posted on Social Media:blog1

-I broke my foot on a Thursday walking out of work.  My gut is that in trying to motivate a kid to participate in our group, I took a dare and did the Fortnite dances for him.  It wasn’t pretty and I’m fairly sure that I did something that gave out the next day as I went to walk down some steps.  I was petrified that my screws/plates in my ankle broke free. Nope jut fractured my 5th metatarsal bone.

I posted this on facebook:img_4004-2

-Two days after I broke my foot, I found out my dad choked while eating dinner at a restaurant.  He ended up having a mild heart attack and ended up with aspiration pneumonia.  I was non-weight bearing and struggling to move, so I was unable to get to him.  I felt like a horrible daughter living two hours away.

This was my social media post: img_4002

-I had to stop working my two part time jobs while trying to recover.  I use that money to pay for Georgia’s medical needs.  I was panicking about how I was going to make ends meet.

I posted this:img_4005

-I struggled for the next two months by not weight bearing….and I cheated a lot.  My autoimmune diseases began kicking my ass in unison.  My thyroid combined with peri menopause is making my hair fall out.  It’s so thin now and a little horrifying to take a shower and then be covered in strands all down my body.  My arthritis continued to flare and exhaustion was my best friend.  Depression raised it’s head again and I became so very sad.

This is what I posted on social media:Screen Shot 2019-05-05 at 5.55.58 PM

-My neighbors helped me pack my car for both Thanksgiving and Christmas, so I made it home with my family.  I could not have done that without them.  My parents health is not always great and I ended up not getting the rest my foot needed to heal because they needed so much help, and walking was my only reasonable option to help them.  Non-weight bearing took a back seat to helping my parents.  I ended up spending an extra month in a boot as a result and I was so upset but I knew it was my own fault for not following the plan.

I posted nothing but happy:

 

 

 

 

-On January 2, I returned to work and put in a 12 hour day (not working these jobs so I could heal caused me to fall behind on bills, I had no choice but to go back before my doctor thought I was ready ).  I stayed non-weight bearing all day.  Hobbled up the steps.  Put the crutches on the ground to enter my living room and my cat tripped me.  I fell and ended up breaking 3 toes and caused the “sheath” around my toes to pull/tear (I have no idea what that means…my doctor was more focused on the foot b/c I was initially seen as workman’s comp.  He had no desire to deal with my toes).  I was in excruciating pain but thought they couldn’t do much for me anyway and I was in a cast anyway. I ignored the pain and went about working my 3 jobs while managing my own and Georgia’s illnesses.

I posted this:img_4014

-After 3 months, I got out of my boot and began walking poorly.  PT was mostly focused on healing my toes b/c that is what was really messed up.  I used a cane for 3 more months because my balance was so bad.  I’m still in PT and I am hoping that this upcoming Tuesday I will be dismissed.  The cane is still in my car because I am still not capable of walking long distances without it.  That reality breaks my heart.  I know it’t not the end of the world, but it hurts to know it is my reality now.

I posted this: img_4020

-My dog Georgia started having chronic UTIs as a result of her diabetes.  She has maxed out on her insurance for diabetes (she has limits per illness), so none of it was covered.  For four months, she would be treated with a pricey antibiotic for 2 weeks, then have one good week, then start peeing blood all over again.  I took her in for cultures 3 times.  First time, I was told there was no pee in her bladder.  I took her back a week later.  This time, I was uber prepared.  I carried her in and gave her no chance to pee but was told again….no pee in her bladder. I politely argued….then to prove me right, Georgia peed a bucket of blood in the waiting room.  Two more weeks of antibiotic then try again for a culture.

I posted this: img_4019

-My hair is literally trailing behind me as I walk.  It keeps falling out and I am very freaked out.

I wrote about my hair loss, but posted this:

IMG_9756
Photo by Pet Imagery:  Click here

Instead of posting this:              img_4027

-Pain and exhaustion is my BFF.  I turn down plans with friends because I can’t stomach the thought of sitting upright after working all day.  I don’t have the energy for small talk. I don’t have the energy to put on a happy face because I save that for my coworkers and students.  So I stay home and honestly, I’m fine with it….except for my house.  It’s a mess.  That is another thing I need to deal with at some point.

I stayed positive and posted silly nonsense instead of the truth:

img_4017

-My dad choked again while out to dinner celebrating my parents’ 50th anniversary.  I called to surprise them by paying for the dinner only to catch them as the ambulance was wheeling my dad out of the restaurant.  He ended up being okay.  I recommended a test, but his doctor recommended something else.  I knew that test would reveal nothing and it did reveal nothing (which is good) but now I fear anytime he eats it will happen again.  I can’t convince him to make an appointment for a swallow study which can show where the issue is located.  My stress level is high.  My emotional state is even lower, but what did I post?

 

This:img_4021

 

-Two weeks have passed and I take the dog back to the vet.  They still can’t find her bladder on an ultra sound.  So they do an x-ray.  I’m a lay person, but to me….it looks bad.  Like smokey bubbles all over her insides.  I ask, “Do you see a kidney stone?”  The vet responds no.  I then ask, “Do you see something worse than a kidney stone?”  My sweet vet responds, “Probably”.  My heart breaks as I hear of two potential diagnoses of transitional cell carcinoma or a non-curable cystitis.  I got hugs and sad faces as I left the office. I sobbed and when I ran my hand through my hair clumps came out in my hand.  I cried harder but posted this:      .58876468_376979956492860_2594769706938269696_n

-My vet contacts me the following day to say there may be hope and that Georgia may have a rare complication from diabetes that is curable instead of the two terminal issues mentioned.  She has to go in for more tests to determine if she has Emphysematous Cystitis.  I was afraid to have hope, so I posted this:

img_4029

 

Three days later, I regret that manicure because Georgia ate an entire bottle of pills (akin to doggie advil).  She has never touched her medication, but these were samples and chewable treats.  She sussed them out and opened the bottle and chowed down.  I knew the next morning she was ill but it took me some time to determine the cause.  Two days in the hospital and another huge bill.  This time, I was mostly honest in my posts and frustration with the animal hospital.  It seems I am mostly honest in my posts about Georgia more than anything else.

 

 

 

 

Since December, I’ve spent over $5000 on Georgia’s medical care and it’s taking a huge toll on me physically to keep working these crazy hours and mentally to stay positive.

I hide my reality from my family and friends on social media. Honestly, I think the only place I am fully honest about my health is on my blog.  Why am I honest here and not in other social posts?  My family and friends don’t read my blog.  They know about it but are either not interested or are too busy.   Honestly, I get the feeling that most people in my life either think I am too obsessed with my dog, don’t now how to help me, or think I over exaggerate the pain I live in. My neighbors and colleagues are the ones who seem to understand me the most.  They see me day in and day out and they are very aware of the struggle I live with.  My support system has changed as a result, but it is what it is.  It’s the sad story of chronic illness, isn’t it?

So if I was disabled would I lose disability benefits because of my posts on facebook and instagram??  Would my social media footprint disqualify me from disabled because I smiled or posted about manicures and pets?  In reality, I literally hid all the horrible stuff  going on in my life and posted about my dog…until her health became a real nightmare, too.  I think psychologists would have a field day with my psyche.

I guess the moral to my long and winding story is don’t believe everything you see on social media. People in physical and mental anguish still post photos of their cute pets, food they eat, and pretty flowers.  The government will open a big can of worms trying to persecute people with disabilities from being human and living life as best that they can.

Hang in there friends….we’ll fight this together.

 

 

Posted by

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.

9 thoughts on “Sorry for smiling….

  1. I needed to consider my social media when this notice started. I was concerned that my social media (I enjoy riding my bicycle) might be misinterpreted. It makes me second guess everything I post and everyone I tell. Let me make it clear, I am sure I am disabled for a legitimate reason. But, and this is the scary part, I never know what i might say and to whom I might say it that may someday be used to ruin me.

    So I can stop posting, Now how does that benefit the world? Yes it makes us more disconnected less genuine, and less connected. Talk about dumb.

    Liked by 1 person

      1. I am, I get out of my boot next Monday, Then its not time to ride my bicycle. In case Social Security is reading this.

        Liked by 1 person

      2. Oh boy….it’s been so long with the boot for you. I just got rid of my cane 3 weeks ago…but it still hurts. Georgia ended up with a rare complication from diabetes called emphysematous cystitis. It’s been a mini nightmare. Two weeks ago they told me she was 70% better. I’m seeing the light at the end of this nasty tunnel. Enjoy those bike rides! Georgia and I are enjoying walks, we both limp, but we both smile 🙂

        Like

  2. I know of people who have had this before and it is always very painful and sometimes fatal. Poor girl !! I am glad she is recovering, and that she and mom are doing some walking.

    I had surgery on February 13, and today he gave me one more week. Oh I am so read to not ride my bike. 🙂

    Liked by 1 person

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