Why It Can Be So Hard to Advocate For Ourselves

We must be our own advocates. I’ve lost count of how many times I tossed out that little chestnut to others and to myself in a quiet moment. And that’s the thing. I have to keep telling myself to do it. Don’t spin your wheels, Kim, it’ll make you feel more frustrated and angry and helpless with each passing minute. Make that phone call and ask questions. When I follow through I don’t always feel triumphant. I lose some, I win some. But a sense of pride slips in regardless for having done all I could do that day. Isn’t that the main thing? To do everything I can to problem-solve/better understand/make a complaint? And yet I still find it hard to self-advocate.

Feeling a sense of accomplishment

Feeling a sense of accomplishment certainly is important. But self-advocacy is also an extension of being an autodidact, which is what we all are every time we do a little research. Initially we might set out to accomplish something like get out of paying an erroneous medical bill. Or, if we are the type to tilt at windmills, we dream of turning the tide of Big Pharma greed by phoning in a complaint to Biogen or Glaxo Smith Kline and hearing: Congratulations Ms. Dolce, you are the one millionth caller! To commemorate the occasion, we will drop the price of all MS drugs by 86% effective immediately and forever and ever. Amen.

The need for validation

The odds are good that we can get a bill corrected or forgiven. Not so good that a pharma exec will see the image of Jesus in his cappuccino froth and develop a conscience. In the absence of accomplishment, making the call gives me a fresh experience and a new tidbit of information. I prefer to think of myself as a mature adult that knows I can’t change the world and no longer needs the validation of exams and term papers and letter grades. Problem is, I’ve always thrived on the validation that comes with praise, a high exam grade and an A on my papers throughout college. It was pretty predictable, too. College was easier than high school because the professors always passed out a syllabus the first day of class. There was no mystery to it. If you wanted an A then you must do these things. Want a B? Just do these things. A C? Just do the bottom half. Want to fail? Don’t come back and don’t drop the class, you’ll get an E for sure. But life outside academia has no meritocracy we can count on. Is that why I struggle to advocate for myself?

Advocating for others over ourselves

Self-esteem might be at the center. How many of us don’t hesitate to go to bat for loved ones? A woman once left a comment on one of my articles explaining how her son was in the hospital and trying in vain to tell the nurse his drug records had been updated and he no longer needed a certain injection she attempted to force on him. The mother called the charge nurse, explained the situation, and got her son listened to and properly taken care of. Then she told me how she really needs to work on doing that sort of thing for herself. She gets validated for being a good parent, selfless and vigilant. But patients—women especially--have a long history of being dismissed when they try to do the same thing on their own behalf. As though one could be both a tireless caregiverand a hypochondriac.

Dealing with fear and denial

Primal emotions play a part, too. Fear is a big one. Fear can foster denial. If we deny having issues at our neurology appointments then we also don’t have to face what MS is doing to us. Except we silently suffer every day. Magical thinking keeps us going for a while; if we wait and think positive thoughts then MS will fade into the shadows along with the boogey man and the monster under the bed. But it doesn’t quite. It’s like trying to wish Santa into existence. Or engaging in feverish group think to save Tinkerbell’s life in PETER PAN. It works in the novel but willing a dying person to be restored to miraculous health is kind of hit-and-miss in the real world. The choice that’s left for us is to grasp the moment and be fully in it, whatever happens.

In light of all this, I guess self-advocacy is a grown-up, chosen behavior that requires constant practice. I’m not crazy about keeping ACT oral rinse in my mouth for a full minute, but I do it for the sake of my health. Nobody is going to swish it around for me, and come to think of it, I wouldn’t want them to anyway.

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