You look fine, so nothing could be wrong with you. The medical report said you are managing your condition well, so nothing is wrong with you. You don’t look sick, you must be faking it.
Time and time again those of us living with an invisible illness hear these words. And each time it is like being stabbed, a searing blow to the soul. Because let’s face it – when you live with an invisible condition, it can be hard enough to manage the physical let alone the emotional side of things. And then when people doubt you altogether, invalidate your plight with a few callous words? *sigh*
Yesterday I was involved in an online exchange in which someone (who really should know better) proclaimed, in all capital letters:
“IF YOU CAN’T SEE THE DISABILITY, THEN YOU ARE NOT DISABLED.”
No no no no no no no! This is IGNORANCE! It makes me want to lose my head in rage!
Stop allowing this stupidity to go unchecked! The next time you hear someone say this, call the person on it!
Spread the word – the simple truth that you never know what the person next to you might be going through. Encourage compassion. Listen. Try to understand.
Source: Stickman Communications
And next time you find yourself wanting to say “But you don’t look sick!” — don’t! Instead, ask a question, like “I had no idea, what is it like living with XYZ?” Or this one goes a loooooong way and avoids and judgement – the ever so simple “How are you doing?” that encourages a response and a conversation!
Because we are all about so much more than what meets the eye.
September is CMT Awareness Month. CMT, or Charcot Marie Tooth disease, impacts 1 in 2500 people including me. CMT is a so-called “invisible illness” because it is a neuromuscular condition where nerve damage does not automatically translate into a physical manifestations of illness. People with CMT often live and manage significant amounts of pain caused by nerve damage and progressive degenerative muscle atrophy. Fatigue is a frequent symptom. To learn more about CMT please visit CMTAUSA.org. Thank you for your support.