Jon Rodis

Author: Jonathan  Rodis

President-Massachusetts  Chapter of the National Marfan Foundation

Head-EDS Massachusetts  and New England Support Group

 

 

 

“I wanted to share with you something I wrote to  help everyone understand what it is like to be disabled, what it is like to  have an invisible disability, what to do if you find yourself trying to explain  your quality of life to the world around you. 

One thing that helps me awaken family, friends,  colleagues, etc to what it is like to live day to day in this body is something  I came up with back in 2001 when I was filing for disability.  

Deciding to file for disability was one of the most  difficult decisions I have ever had to make.  It was hard enough to have to give up my  career but I knew that my health was getting much worse the longer I continued  to work.  Once I decided it was  time, I began the process.  One of  the first steps was to fill out the social security forms/application. (to  apply)  I could have applied over  the phone but I chose to go in to the office and sit down with one of the SSA  representatives.  Here is what  happened..

As I walked towards the representative’s desk, he looked  at me and said, “You’re disabled?”.  WOW….I couldn’t believe what he just said.  My first reaction than my jaw hitting  the floor was to hit the guy as hard as I could and knock him over his  desk.  I knew that wouldn’t help my  approval chances so I took a deep breath and my mind/mouth said the following to  him…”Let me tell you just part of what makes me disabled.”  “Think about the last time you had a bad  cold…your whole body hurt…you were pretty weak…you probably had some  dizzyness and you felt like crap.”  I gave the guy a few seconds to think about it and then I went on to  say..”That is how I feel 2-3 days a week.”   I gave him a few more seconds and  I then went on to say..”Now think about the last time you had a bad flu”.  I gave a few more seconds and  added..”You not only hurt from head to toe, you probably were extremely weak and  had bouts of dizzyness,,,getting out of bed was nearly impossible,, and you  definitely were not able to do the smallest chores..never mind go to work.”  I gave a few seconds more…and  said..”That is how I feel 4-5 days a week!”  At this, his face was completely red and  asked me in a very solemn tone to please sit down.  He didn’t understand what an invisible  disability was and I gave him a crash course. The meeting went very well from  then on and I gave him more reasons I could no longer work. –

I hope my story can help you and everyone with helping  people relate to what we go through by experiences they themselves can relate  to.  Everyone has had a cold and  flu.

Another thing, next time one of your relatives or friends  or whoever doesn’t get it, call them when they are sick with a cold or flu and  ask them why they are not at work or school or whatever.  In a nice way, tell them this is how you  feel most days.

Also, for those of you who have disability placards for  your cars and someone comes up to you and tells you that the space is only for  the disabled…tell them you are disabled..and why you have the card.  Their face will probably drop.  People need to realize that disability  is NOT necessarily a wheelchair or crutches. 

I hope what I wrote above helps with trying to get people  to wake up.  I have to say, that it  has helped me with not only dealing with my friends, family, etc but also in  educating medical professionals on what it is like to have an invisible  disability as well as a connective tissue disorder.”

Jon is also very active as:

Chair-Physician  Awareness Committee(s) for Marfan and Ehlers-Danlos  Syndrome(s)

National Disability  Advocate for Rare Disorders

Member: Winthrop  Disability Commission

Click Here for Jon’s  Website

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