Waspish Wednesday: Please Don’t Comment on My Voice!

This post cross-posted at ChronicBabe.com.

Or, Behavior Modification (Training) Works on People, Too!

I’ve been disabled by chronic fatigue syndrome and multiple chemical sensitivity since 1995. However, when I became infected with Lyme disease and two other tick-borne diseases in 2007, I developed several new symptoms. One of the strangest and most difficult has been intermittent vocal cord apraxia, which means that sometimes I can’t make voluntary sounds, most notably speech.

The amount of voice I have occurs on a spectrum from total inability to speak, to severely affected (like a cerebral palsy accent), to scratchy and hoarse (like laryngitis), to completely normal. Most of the time, my voice slowly improves over the course of a day: upon waking, I can’t make a peep, but by nightfall, I can talk a blue streak. Other times, it’s very sudden: at noon I can’t say a word, but by 1:00, I speak fluently. Conversely, I may be talking fine until a chemical exposure or an exertion (e.g., taking a bath) steals my voice in a flash.

Frequently, when I can’t speak, it’s the sign of a “bad day,” when I’m also immobilized by severe pain and fatigue. However, there are times when I can’t voice, but I’m not feeling worse than normal — as well as days when I can speak, but I feel like hell.

Unfortunately, most use my voice as a barometer. Not only do they assume that if my voice sounds good, I must be feeling good, they also jump to the conclusion that I am recovering or have been cured! Virtually everyone* to whom I say, “Hello,” on the street or the phone, immediately responds with comments like these:

  • “Hey, you’re talking! You must be thrilled!”
  • “Your voice sounds so strong today! You sound really energetic!”
  • “Oh dear, I thought you were getting better. . . .” (This is said with deep disappointment, followed by an awkward pause, then a hurried escape.)

I usually just grit my teeth and change the subject as fast as I can. I understand the drastic changes in how I sound can be confusing, especially to new people in my life, but for people who have experienced the vagaries of my communication issues for years? In those cases, I want to scream, “Shut up about my voice! Just ignore it and treat me like a human, not a symptom! Stop guessing what it ‘means’!”

I don’t scream, especially because I know that these remarks — particularly the “your voice sounds terrific!” variety — are intended as compliments. Nonetheless, at a certain point, I decided to ask people not to start every conversation with a discussion of my voice. I usually say something like, “I know you’re trying to be supportive and encouraging, but I’d really prefer if you didn’t comment on my voice. You see, almost everyone does this, and it gets really tiresome.”

The response is usually a surprised and confused pause, followed by profuse apologies. I interrupt this, too, saying there’s no need to apologize, that they didn’t know, and that it’s just information I’d like them to have for the future. The best response is a “thank you for telling me.” This tells me they have not taken it personally. So far, this strategy is 100 percent effective; if I make this request, it is always honored.

Everyone has their own preferences about whether, how much, or with whom they wish to discuss their health or functioning. I personally restrict such discussions to family, and close friends who are also disabled. I know I’m not alone in my struggle. Like others with disabilities, I’ve had people comment on, and try to judge the state of my health based on, my use or non-use of various assistive devices (wheelchair, oxygen, filter mask, service dog) or my behavior (standing, sending an email, writing a post, leaving the house).

My advice to chronic babes who’d like others to ignore perceived clues to the vagaries of your condition? Tell them! My advice to those who I speak to on the phone or on the street? Ask about my dog training, writing, or opinion on the weather — just don’t mention my voice!

*The exception to this are those who see me, day in and out, with and without voice, and are used to its vagaries, such as my partner, my personal care assistants, and a small number of friends who are also disabled.

4 Responses to “Waspish Wednesday: Please Don’t Comment on My Voice!”

  1. 1 wendy October 13, 2011 at 5:21 pm

    What really hit me with this is, how people think you are better when your voice is better, and when they say Oh, I thought you were getting better….That’s hurts me so much.

    I went through a spell recently where they thought a treatment was working…and it may again, who knows. For 5 months, I was as close to “normal” as I had been in a very long time…then relapse, and so many people said…I thought you were better…Well, dammit so did I!

    But that is different.

    I hate it when I actually put for the huge effort to look good, and see people, and they say…you look so good, I’m glad you are feeling better…Ummmm, yeah, it’s just the makeup and clothes, not me feeling better!! I like to look good sometimes, it doesn’t mean that I’m all better now.

    I was talking with my husband recently about how people accept that cancer patients are going to feel bad…possibly forever, even on days when they look better, they know, they are still sick. But with people who have a chronic illness, they are there for a little while, and pull away. They think you, just want attention, are psychosomatic, or that you don’t want to get better. Or even worse…so when are you going to get better?.

    I recently wrote a post on live journal (I am really starting to hate that dang site) about how afraid I was about my having my recent procedure…how I was afraid of them saying…”I don’t know, but we know what it’s not.”

    I got two comments that really struck me as crossing that line. They said, (and I’m paraphrasing from memory here) You deserve to feel better! It’s about time for those doctors to fix this. If you aren’t getting well find another doctor., and my favorite. You are not their guinea pig, demand that they do more.

    Um…actually, I am their guinea pig, I’m in a research study trying to find a cause for Meniere’s. I signed up for this because I want to know, and I want to help others.
    Demand they do more…they are trying hard. Really, they want this to work, think of the motivation they have…if they find a cause for Meniere’s..that’s big!
    And I may “deserve” to feel better, but. why should I? No one asks for a chronic illness, what makes me different? It’s not time for the doctors to fix this…I have something that is CHRONIC…it will never completely go away. I may feel better, or but I have these things.
    Get over it. Love me the way I am of go away! I’m sick of it.

    Support me, and treat me like a person, not just like an illness, or go away! Don’t ask so much about my illness. It is something I will answer, and you may not want to hear the answers.

    I really need to learn to be more like you and keep the details to myself. But since I’m in a study, people are interested. However, I think only the people who also have Meniere’s should be asking.

    One more thing that really ticks me off…Do NOT try to fix me, diagnose me, or give me advice as to what new treatment may work….(unless of course you are my Doctor! or other specialist in this condition) I’m smart, I read, I research, I ask questions….I guarantee, I know more about what is going on with my health than anyone else does!

    Oh, my…I think I needed to rant.

    You hit a nerve…that’s good…it’s good writing.

    glad people listen to your request.
    hope you don’t have to ask it many more times.

    I still haven’t figured out a way to tell someone that I don’t want them to try to cure me without them taking it personally.


  2. 2 Sharon Wachsler October 14, 2011 at 2:18 am

    Wendy, I can see I touched a nerve, yes!
    This is how I feel, too: “Do NOT try to fix me, diagnose me, or give me advice as to what new treatment may work….(unless of course you are my Doctor! or other specialist in this condition) I’m smart, I read, I research, I ask questions….I guarantee, I know more about what is going on with my health than anyone else does!”
    In fact, it’s such a common problem, I created a postcard cartoon about it, and it’s always been my most popular cartoon: http://sickhumorpostcards.com

  3. 3 Starre October 15, 2011 at 9:56 pm

    I can definitely understand the frustration.. I get the “I’m sorry you are having a bad day” whenever I use a mobility device or brace.
    I do wish I could get people to understand my voice (or truthfully my verbosity) IS a barometer. The other day I had an encounter with a “Friend” that went something like this
    Friend: ‘hi!”
    Me: *wave*
    Friend ‘I said hi!”
    me: waves again
    Friend: *touches me on the shoulder* *Yells in ear* “are you okay”
    Me: Nod.
    Friend: Shakes me “Hello! Starre! Are you okay”
    Me: Go. Away.
    Friend: Why are you mad at me? *follows me around for the better part of an hour whining about how he is a nice person and my friend*

    I need to have t shirts made or something, I swear.

  4. 4 Sharon Wachsler October 15, 2011 at 10:48 pm

    Wow, that sounds *incredibly* frustrating. I do not understand the yelling and following you around?? It does seem like a T-shirt would be a good idea! LOL Well, here’s an addendum to my post. One of the people I asked quite a while back not to start conversations off about my voice who thanked me for telling her — very sincerely — called me today, and she immediately commented on my ability to speak! I was shocked. I wasn’t able to talk right then, and I was just so stunned, I said something like, “I’d rather not talk about that,” and got off the phone. I’m fairly certain she forgot we’d ever had that conversation, but she sounded upset. Now I have to call her and go through it again. I absolutely know her intentions are good — she was calling to give me support because I’ve been going through a hard time — and I didn’t mean to hurt her feelings. I am just so tired of people commenting on my voice! So much for my 100% success rate. sigh.

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