t h e w o r l d o f i n v i s i b l e i l l n e s s

Don’t park there! You’re not handicapped!

The note felt angry.  Certainly blaming.  Obviously rude.

I understood because I’ve left that kind of note, but only on windshields without placards.

No takers when the manager of the Goodwill store where I was shopping made the following announcement (I had to bully her first):   WILL WHOEVER LEFT A NOTE ON THE CAR OUT FRONT PLEASE COME TO THE FRONT OF THE STORE.

I wanted to have the opportunity to talk with whoever judged me without knowing me.  I have multiple sclerosis, at the point in the disease’s progression where symptoms are more wax than wane.   I would tell them about how invisible, or hidden, disabilities sometimes do necessitate a handicapped placard even though it might not appear so.  I’d give examples, like heart disease, diabetes, neurological diseases, RSD, fibro, cancer, adding that the list is a long one.

I wished they’d been behind me at the Dollar Store when my bladder acted up.   Or in the same store as a client of mine who described stumbling into a  display before  being escorted out  as a drunk.  Maybe they could explain why strangers offer me assistance when I think I’m moving just fine.   What did they see that the Goodwill shopper didn’t?  If I had to guess, it would be because I was observed going into the store, rather than when I was finished; big difference.

Reminded again of the struggle in having an invisible disability, I’m sad that in addition to symptoms that are now here to stay (tremor, swollen extremities, multiple falls, poor bladder control, loss of balance, difficulty swallowing, nerve conduction impairment, word finding difficulty, holes in my memory) I’m still having to explain myself.

The irony isn’t lost on me.  I get it that I overdo when I feel good.  I get it when clients tell me the same thing, even down to wondering if they’ve made up the whole disease-thing after all.   I’m crushed each time what I know to be true really is.

The toll is great, paid in relationships confused and frustrated by the two messages the invisibly disabled throw out:  I’m fine/I’m not;  help me/don’t.

Invisibly disabled by multiple sclerosis for more than half my life, I’m glad there’s people looking out for the fair use of handicapped parking.

Mostly, I’m delighted I looked good enough for someone to regard me as normal.

Categories: Effect of invisible (hidden) disability on relationship

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