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.