Traveling by Golf Cart or The perils of having an invisible disease

Yesterday I went on an excursion to help a friend of mine look for an apartment.  We saw beautifully manicured lawns, lovely swimming pools, Jacuzzis, and hiking trails galore.  Plenty of parking areas, and family-friendly play sections.  This beautiful complex had everything an able-bodied person would want.  We traveled around on a golf cart since moving about on foot would have taken forever, but I have a secret.  Traveling on foot would not have been just an inconvenience, it would have been impossible.

I am one of millions who has an invisible disease. It is not usually obvious to those who see me walk from my car to the supermarket, or even as I take the dog for a midday stroll, but I am technically classified as disabled with a condition expected to last long term or end in death.  You, my public, would never guess it as I greet you on the street corner.  If you are the observant type, you might notice the handicapped placard in the rear-view mirror of the car, or if you aren’t into placards you may just think I have been rude enough to take up one of those handicap spaces that someone else should use, because after all, there couldn’t possibly be anything wrong with me.

I constantly hear something that goes something like – I can’t believe how well you look. You must really take care of yourself.


No, unfortunately, I don’t take great care of myself, but I guess I do look pretty good.  Especially to those who have known about my disease for over 15 years now, and expect to see me on death’s door at any moment.  But, I am not the face of Cancer or ALS, I am the face of an invisible chronic illness. I live with debilitating pain, and yet I keep on plugging away at life.

Sometimes I even live with the real fear that I will wake up and this will be the day that it all falls apart. At times I have limited mobility, limited eyesight, limited strength, and limited ability to focus.  I also have unlimited ability to create, imagine and inspire.

That is why, when you see the next person walk away from that car parked in a handicapped spot, allow him or her that little bit of dignity and don’t question.  She may be in considerable more pain than you can imagine, yet at the same time, she may be dreaming about how to create the next new clothing line.  Don’t assume. Cheer.  The person who you just saw walk unassisted into that shop is a person with courage.  She is outside in the world, living daily, functioning, and more importantly, she is NOT giving up. She is creating a life and committing to a dream.   And while you are at it, please, try to remember that looking good does not always equal feeling good – there are plenty of days I have looked great and felt like crap…How about you?