Thursday, August 23, 2012

Advocating for Another Carnival: The Challenges

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Tuesday, August 21st, through Tuesday, August 28th, I'm participating in WEGO Health's Advocating for Another Carnival.

Learn more about how to join us here: Look for A4A Carnival posts by following this hashtag on Twitter: #A4AMonth.

There are prompts for parents, caregivers, health activists and people who prefer to participate through social media, not blogging. A little something for everyone.

Today's Prompt: August 23 • Day 3: Challenge Accepted! Post
Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist.

One of the biggest challenges associated with being a health activist is the helpless feeling that arises when there is nothing you can suggest for someone who comes to you for advice. I absolutely hate it.

If I can at least point someone in the direction of good resources, share a few things that help me cope or set them on the right course with applying for disability benefits, that feels great. But sometimes people are in such complicated situations with their backs against the wall that there isn't much of anything you can suggest that will help them.

Don't get me wrong, I know it helps to be a listening ear and a shoulder to cry on, but it's still a very helpless feeling.

Another difficult aspect of being a health activist relates to people who spread misinformation about the disease you're an advocate for and trying to educate people about. Sometimes it's deliberate, sometimes it's based in ignorance. Either way I find it infuriating.

It feels impossible that the little army of educators and advocates I'm a part of could ever effectively battle the tide of misinformation out there, but we're still going to try. If we gain trust among readers our reliability and accuracy will spread to others who need our help.

Finally, at the risk of sounding completely petty, I hate dealing with know-it-alls. I believe it's a sign of insecurity to carry yourself as though you know everything, and I'm sympathetic to that. But I still hate dealing with it.

For me one of the most outstanding, amazing things about being alive is the capacity to learn something new every single day. Even though I do know a lot about living with migraine disease because I've done it for the past 28 years, give or take, and doing tons of reading (books, high quality websites and medical research studies), I'm always learning something new. Even just something as simple as talking on the phone with my friend Teri Robert often leads to a new tidbit of information, whether we're talking about our personal lives or migraine specifically.

I guess I just find myself wishing more people were as open to learning as I and most of my readers are. I think it's hard to be as open as you need to be if you're defensive and posture as though you already know everything there is to know.

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DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.