FYI – Neuropathy Awareness

If you see me stumbling down the street, NO I am not drunk. Please do not call the police on me or mock me. I have a serious health condition, a dirty little secret that few want to talk about – NEUROPATHY.

Unfortunately I could only find statistics going back to 2012, which means the numbers are probably higher, but even these numbers are staggering.

~ 20 million people with diabetic peripheral neuropathy (source: US Dept. of Heath & Human Services)
~ 86 million with pre-diabetes who are at risk for developing DPN (source: American Diabetes Assoc);
~ 21.5 million pre-diabetics have peripheral neuopathy (source:Neuropathy in Pre Diabetes Study);
~ 230,000-575,000 with HIV-neuropathy, or 20-50% of HIV patients (source: CDC);
~ 420,000 with chemotherapy-induced neuropathy, or 30% of cancer survivors (source: American Cancer Society);
~ 125,000 with Charcot-Marie Tooth hereditary neuropathy (source: CDC).

My neuropathy is two-fold. It began with diabetes. Just some tingling in the toes, nothing too serious and I was working to control my diabetes. And then in 2012-13, I underwent chemo for uterine cancer. The neuropathy quadrupled in my feet and went into my hands as well. Today, my hands aren’t affected much, but in my feet, it has worsened and crawled half way up my calves.

Neuropathy is a real health issue and it is immensely painful. Some people, like me, cannot take the drugs on the market to minimize the pain because of side-effects or because insurance won’t pay for them. And our suffering gets marginalized by those who’ve never felt the stinging burning or ice pick pain in the middle of the night. The alternating hot and cold of our feet and hands. Heat that only burns on the inside even though our feet and hands are icy cold to the touch. Cold that feels like someone has put your feet or hands into a fire and you expect them to be burnt, but there is only cold flesh. And then there are the itching, sharp jabs and the pinpricks, all isolated to one single location, but you cannot get it to stop, not by scratching or slapping the spot. No, it continues until it is done and you are just left feeling crazy in the head. It’s the jerking that really freaks me out and wakes me in the middle of the night. And I ask myself, just as so many have asked me… If my feet are numb, why is there so much pain?

So I was drawn to write this today because I watched a woman stumbling in the grocery store. She had a cane, but I could tell that her mind didn’t know where her feet were stepping. A passing shopper commented loudly to her companion, “They shouldn’t let drunks in the grocery store.” The companion said just as loudly, “Maybe I should call the police.” The woman shook her cane at them and said, “I am not drunk, you idiots. I have neuropathy in my feet!” The two hurried away down the aisle. I smiled and nodded at the woman and simply said, “Me too.”

I write this to simply ask for your awareness. Not everyone stumbling down the street or dropping things in a store is drunk. They could very well have neuropathy. They deserve our compassion and empathy, not our disdain and mockery.

 

 

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