Like so many people living with conditions that don’t present with obvious symptoms, Carol has repeatedly experienced others’ insensitivity. Here Carol shares some of these comments and offers advice to those who find themselves facing similar circumstances. With the year coming to a close, we thought it apt to help make compassion top of mind in early 2022.
“Hm, isn’t it funny how only sometimes you use a cane?”
[I live with] chronic pain from fibromyalgia, restless leg syndrome which can affect the entire body, not just the legs, and possibly multiple sclerosis. I say “possibly” because I am currently working with a neurologist to determine if my occasional jerkiness/twitching is MS or not. I also have a depressive and anxiety disorder.
“So, no cane today?”
The way [some] comments were said was skeptical of my actual need for occasional assistance.
My response was, “I wish I didn’t need to use that damn thing at all. [And] “God made me this way, so He already knows.”
“If you just pray about it, you’ll feel better.”
The public, in general, need to understand that just because I’m not a senior citizen, or because a person is overweight, does not mean using the electric carts in stores is a sign of laziness.
Family and friends need to accept the fact that if a person occasionally needs to use assistive devices does not mean they are faking or looking for attention.
“You need to trust the Lord.”
Be your own advocate. When looking for answers, do your research but DO NOT SELF DIAGNOSE. Talk to your doctor. Ask for referrals to someone who can answer those questions.
If you have a doctor that doesn’t believe you, then it’s time to move on [and] find someone who will.
Lives with fibromyalgia, restless leg syndrome and depressive and anxiety disorder
Has someone hurt you by being insensitive to how a condition affects you? If so, share what you heard and how it made you feel.