Invisible Disabilities; Anger and Ignorance

I can't believe how in this day and age there are
still people with the gumption to look at any person, 
with the specific person being me, and saying, "yup, 
you really looked disabled", as he showed a "thumbs 
up" sign when referring to my Mini Van being parked in 
a disability spot, with a disability sign on the front 
window. 

This is the same Mini Van I recently purchased to 
transport my new electric wheelchair with me so I could 
perhaps reach out into the world in an effort to grasp at some of the life I once had. The same Van that had my 
supportive back brace sitting on the centre console, 
with my new months collection of pain medications in 
blister packs sitting in a Shoppers Drug Mart Bag on the passenger floor. The same Van that had my walker in the back, the same walker that was becoming harder and harder to get out of the van to use.

I can't believe how shocked I was to have some random 
person speak to me like that, but more so, how 
shocked I was at my own angry response to this his 
comment.

It's hard enough to live with this "invisible disability" without 
having to tolerate the ignorance, and uneducated gall 
of some man who seems to have a desperate need, 
without being invited in any way, shape or form, to open his mouth on something that has nothing to do with him.

You know the shocking part? If I had seen this man 
anywhere I would have figured him to be an educated 
man. His entire appearance and presentation speaks 
intelligence yet when he opened his mouth all 
appearances are overshadowed by the ignorance in his 
words.... I guess I misjudged him the same way he 
misjudged me, but I wasn't the one who made that 
comment, or any comment at all until I was insulted 
publicly in front of a busy shopping center for no apparent 
reason.


Just because I don't look sick as you see me limping out 
of grocery store, doesn't mean I'm not injured or 
suffering. It just means that at that moment my 
medications are working well enough to allow me to be 
stubborn and determined enough to suffer instead of 
fighting to get my walker out of the back of the van to 
get a small box of garbage bags.

                           

"Invisible Disabilities" 

can be just as disabling as any other disability. 

Just because you can't see it doesn't mean that I and others like me don't suffer.

This was the first time I've ever had to face such 
ignorance since I began to suffer from this rare spinal cord disease. I do hope it will be the last, but unfortunately it probably won't be.

Will this ever change?


For those of you who've experienced anything like this, you have my deepest sympathies and a heart felt apology. Not because I ever remember doing anything like that to anyone, but for the misinformed, uneducated people out there who feel the need to insult things they do not understand..

No one deserves this, but you never truly know how it 
feels until it happens to you.

"Forgive them Lord, for they know not what they do!"

I guess I have to start believing in that myself..

Tarlov Cyst Disease International: Patient Map

LINK TO: TCD International: Patient Map


Tarlov Cyst Disease International: Patient MapIn recent years Tarlov Cyst Disease patients have connected on an International level allowing access to new and older information for "new" or "experienced" patients.

Our Goal?

To ensure quick and easy access to the growing International Tarlov Cyst Disease, Peer Support Networks.

This Map is, and will forever be, under construction.

As new patients are diagnosed we hope to add their names, information and International locations.

The development of this Map is aimed at showing how many of us are out here, and that maybe this rare disease is in-fact not actually that rare, but instead a misunderstood and commonly misdiagnosed Disease.

We welcome all Diagnosed Patients to share their location, diagnosis specifics, age, photo's or any other information you feel best describes how a diagnosis of Tarlov Cyst Disease has effected your life.

We look forward to meeting you, helping you access any and all Peer Support Groups or Programs available and also adding your name and information to the Map that will speak through image, what some too easily deny.

Please feel free to contact; 

Sherri Jones or Sharon Jones-Gillece
tarlov.canada@gmail.com