UGH. If I could do ONE thing to ameliorate the social woes of the chronically ill population, I would eradicate THAT phrase! Those 4 words, or any variant thereof, are the bane of social interaction for many of us who suffer with a chronic/ invisible illness, particularly if you've been ill for a long period of time. It's also a favorite subject of many chronically ill bloggers. Why? That can be a bit tricky to explain to someone who isn't sick, but I will try my damnedest.
We, as the chronically/ invisibly ill community are fed up with that phrase. Most of the time, the people who say it mean well, but sometimes we are met by a skeptic - "Well, you LOOK good... why are you still saying you're "sick"?" THIS is why we hate hearing that. It sounds to us like you think that because we have an aesthetically pleasing appearance, there's no way we can feel as bad as we say we do. Unfortunately, that's the case for some people. I'm going to break this process down step-by-step so it's easier to understand:
1) Person not so intimately involved with the medical aspects of my illness approaches and asks: "How are you feeling?"
2) I typically answer with something like, "Oh, you know, I have good and bad days" or "I'm alright, but still having a hard time with symptoms."
3) They look me up and down and say, "Well, you look great!"
That's phase one of this process. It happens whenever I'm well enough to go to church, or really anywhere I'm forced to interact with people outside my immediate family or circle of close friends. Now, I know they mean well, but I'm still trying to think of what benefit they think this sentence gives to me. The next phase in this process can go one of two ways:
1) I say a forced "Thanks" through gritted teeth and leave, as an awkward silence envelops the immediate area; or,
2) Say, "Thanks, but I wish I felt as good as I look." This will generally lead into a lecture on my part about the autonomic nervous system; Dysautonomia; and how they can't see the nausea, wild swings in blood pressure or body temperature; the sudden and unexpected changes/ release of hormones (any and all of them), the arrhythmias, hypoxia (lack of blood flow to the brain), etc. They will then respond with a stuttered "I'm sorry, I had no idea" after picking their jaw up off the floor and leave, finally decently educated.
Usually, the second part can only be executed on a "good day," which unfortunately, isn't often. However, I have never received further skepticism after providing such a thorough explanation. Yes, I do my homework. It is in my interest not only as a patient, but also as a dedicated biology/ pre-medical student to learn the technicalities involved with Dysautonomia. And not just Dysautonomia; it is in my best interest to familiarize myself with many different illnesses that I may be confronted with as a medical student and professional.
I digress. I am now going to *attempt* to explain WHY "But you look so good" can be so hurtful.
- It can seem to us as though you are trying to say "Well, you LOOK good, so you can't possibly be sick." That, in itself is a hurtful thing.
- Looks can be deceiving: No, I don't usually look sick, and I certainly never look as bad as I feel. POTS generally won't affect my appearance, and when it does, you won't see it unless you live with me. The most you will see is my pasty face, purple extremities, and a blank, tired-looking stare. It's called an "invisible illness" for a good reason.
- The autonomic nervous system controls every body system. So when it gets damaged or becomes diseased, all hell can break loose - on the INSIDE. Unless you are a highly-skilled medical professional looking for pupil reactivity, cyanosis, or edema, the most you will notice from the outside is that we "just look tired." I suspect you'd look tired too if it took you three times the normal energy expenditure to simply stand up, and by doing so causing a cascade of complicated physiological reactions that literally makes your body work and feel as if you were running a marathon - ALL DAY. (See the graphic below for a visual representation of how the ANS as a whole controls the body.)
Many of us have encountered medical "professionals" on our quest for answers who use this exact approach: LOOKS. It is not uncommon for someone with POTS (or any other invisible illness) to be met with, "There's nothing wrong with you; you're just stressed out." This is BEYOND devastating to hear from a supposedly highly-educated physician who claims to want to help people. We leave their offices hurt, confused, and still searching for answers instead of helped and enlightened. When you say it, those feelings are conjured up again and we leave you the same way we left those physicians.
- Many of us are women or teenage girls, so we are often labeled as "stressed out," "emotional," or "anxious." When you dismiss us like the doctors, you are sending the same message.
-Because a lot of us are females, we know how to use make up to look "less tired" and "less pasty." We can be vain creatures. At the same time, however, we don't want to worry you. Women are the nurturers, and we don't like to be the nurtured. It's just nature's way. Particularly here in the South, ladies are expected to "save face" and deal with their problems in a discreet and private manner. We are taught to "grin and bear it," if you will.
(Normal ganglia vs. Dysautonomic ganglia... No WONDER we feel like crap all the time! I think this is pretty powerful in explaining what Dysautonomia "looks" like. Source)
So that's why "But you look great!" is such a hurtful thing to us. Like nails on a chalkboard. Again, we know most people mean well when they say this, and you probably wouldn't think of half of these reasons why it's so damaging. But now you know, and maybe will think about what you are actually saying to someone. Just my thoughts on a very touchy subject for the chronically ill population. ;)
Sydney
"Mama Said" by The Shirelles... because mama said there'd be days like this.
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