Patient Guide Book

Challenges of Having a Disability

Awakening Others About the Challenges of Having a Disability

One thing that helps me awaken family, friends and my colleagues 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.  I have shared this story in my presentations at past Conferences and by phone or e-mail conversations, but it bears repeating it in written form.

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.  When I decided it was time, I began the process.  One of the first steps to apply was to fill out the social security application forms. I could have applied over the phone but I chose to go to the office in person 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 I just heard.  My first reaction, other than my jaw hitting the floor, was to hit the guy as hard as I could and knock him over his desk.  However, I knew that wouldn't help my approval chances so I took a deep breath and 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. Perhaps your whole body hurt, you were probably pretty weak and possibly had some dizziness and, in general, you felt like crap. Correct?" 

I gave the guy a few seconds to think about it and then I went on to say, "That is how I feel two to three days of the 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 most likely were extremely weak, had bouts of dizziness and getting out of bed was nearly impossible. 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 four to five days a week!" 

At this, his face was completely red and he asked me in a very solemn tone to please sit down.  He hadn’t understood 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 of the specific medical reasons as to why I could no longer stay employed.

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

Another suggestion: the next time one of your relatives or friends or whomever doesn't understand your disability is sick with a cold or flu call them and ask them why they are not at their job or in school.  In a nice way, tell them that they are feeling like you feel on most days.

Also, for those of you who have disability placards for your vehicles; if someone comes up to you and tells you that the space is reserved for a disabled person, tell him or her that you are disabled and explain why you use an accessible parking space. Their face will probably drop.  People need to realize that having a disability does not necessarily require a wheelchair or crutches. This will be a great opportunity to raise awareness for the disorder or disease that you have.

I hope that my experience and suggestions will help you in trying to get people to understand your situation.  It has helped me, not only, in dealing with my friends and family but also in educating medical professionals on what it is like to have an invisible disability.

Written by Jonathan Rodis

     President, Massachusetts Chapter of the National Marfan Foundation

     Head of EDS Massachusetts and New England Support Group

Living With Marfan Syndrome: www.jrmarfan58.com