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Things People Say About My Neuropathy

You’ve probably heard about stupid things people say about cancer. Maybe, if you have cancer, or had it, someone has said a stupid thing to you.

The stupidest – or more accurately insensitive – thing that someone said to me was, “You look like a concentration camp survivor.”

She said it when I had taken off my scarf to show her my bald head after chemotherapy. It would be insensitive to anyone but was doubly insensitive to someone like me whose relatives perished in concentration camps.

The things people say after cancer

Less often discussed are the stupid things people say to you after cancer, concerning long term after-effects of chemotherapy or other treatment. In my case, several people have commented about the effects that neuropathy has on my feet.

The other day after tennis, when a group of us was talking about our aches and pains, I mentioned neuropathy. I brought it up by way of saying that when I’m moving and focusing on something else, such as in tennis, it bothers me less.

“Oh, that’s why you move so slowly,” she said.

This person, by the way, is also a cancer survivor. So you’d think she would know better.

Neuropathy: A disturbance in the feet

Now, if someone said they had a headache, would you say, “Oh, that’s why you look so bad?” Hopefully, you wouldn’t do that. You might say you were sorry they weren’t feeling well. Similarly, the reaction to someone saying their feet hurt would more properly be to offer sympathy.

Neuropathy results from damage to the peripheral nervous system, the nerves running from the brain and spinal cord to the rest of the body. I got mine from chemotherapy 10 years ago, but there are many other causes.

The uncomfortable sensation in my feet is difficult to describe; you can have numbness and pain at the same time. My feet feel tingly and like I’m walking on pins and needles. Occasionally, that can escalate to feeling like I’m walking on cut glass.

The symptoms are muted by the gabapentin (trade name Neurontin) that I take, but my feet are never totally fine. There is almost always a low-grade buzz. Occasionally, a sharp, knifelike pain cuts through.

Wondering about my meds

I have a cousin, a doctor, who, each time I see him, wants to know what meds I’m on. I had told him recently but then he asked again. When I mentioned the gabapentin, and the neuropathy, he said something along the lines of, “Now I understand why you walk so funny.”

Sometimes I do walk sort of gingerly, probably because it feels like I’m stepping on something even though I’m not. I’m fine with someone asking if I’m OK, but not with someone telling me that I look funny.

Stopping the little things from getting to me

I could have said to my cousin, “YOU try surviving four bone marrow transplants and see if you walk funny.” But I didn’t say anything. Similarly, on the tennis court, I was mute.

I’m no Roger Federer, but I can get to a lot of balls. Another friend put my court presence a better way. She said we play well together because she moves faster but I can put the ball away. She said she wishes she had my placement.

She also appreciates that I’m even out there, an accomplishment I tend to forget when I let little things get to me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    4 weeks ago

    @ronnigordon people can seem so insensitive, but I really think they don’t mean to be. Appreciating the little things and accomplishments are so much better to focus on. Good for you!

  • Daniel Malito moderator
    1 month ago

    @ronnigordon I feel like comparing things to the holocaust is always off limits, and probably that seems like common sense but it obviously isn’t. I have heard them all as well, as well as my thirty years of RA worth of comments just like it. I even had a guy walk directly up to me in a store and say “what’s wrong with you?” i was so taken aback I couldn’t even come up with a witty retort for like 10 seconds. I say it all the time – people are weird, and every day, it bears out. Good post. Keep on keepin’ on, DPM

  • Ramae Hamrin moderator
    1 month ago

    I love hearing about your tennis stories, Ronni. I don’t enjoy the insensitive things people have said to you. You are so right, though, that the things people say truly are the little things. We all need to remember this at times and keep our focus on the things we can do and are doing, despite all we have been through. You continue to inspire me!

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    Ronni the comments made by those insensitive people make me cringe. I believe in the old mantra of if you don’t have anything good to say then keep your trap closed.
    Never feel you need to explain why you move or react differently; Those who are aware of what is happening with your health should understand right off the back. Keep being strong and doing you. Best!

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