Thursday, August 30, 2012

Why what we say matters.

I constantly share information about Celiac Disease.

I know this annoys some people. My friends are likely nodding their heads and saying, 'yes, Shauna, please do shut up about this sometime soon, eh?' I can appreciate that. I know have a bit of an obsessive personality at times. It comes out with anything new in my life, like the three tiny goldfish that turned into a 10 gallon tank, a 20 gallon tank, a 60 gallon tank, and explorations into fish breeding, live plants, and attempts at mimicking a complete ecological environment.

Like I said, just a teensy bit obsessive. Although my fish tanks were awesome, if I do say so myself.

But with Celiac Disease, it's not always obsession driving me to talk about it. Deep down, this is grief and anger. I talk about cooking and the food industry because I have to think about it all the time. But Celiac Disease is more than that.

I had this for over 20 years. Nine of those could have been avoided if my father's doctor had taken just two seconds to let my father know that since he was diagnosed, the entire family should be tested. Yes, I could have done the research myself, but I suppose I trusted doctors a little more then, and assumed that for the really vital things, they'd surely tell us.

My children were suffering from this, and the doctors - also aware Celiac Disease was in the family  - were as ignorant about the disease as we were. We have relatives with numerous physical problems and stomach ailments who won't get tested now because when we suggested it, they went to their doctor and were told that there was no possible way they could have CD (oh so wrong), so they shouldn't get tested. And so they never did.

This makes me angry on a very personal level. People I love, people I respect and care about, have been hurt by this failure on the part of their doctors and are STILL being hurt by this. And I can't make that go away. I can't get back the last 20 years of my life. I can't make my daughter's lingering pain go away. I can't change any of this.

I've had to find a way to cope with that. I know some have a forgive and forget policy, but I'm not terribly good at that. Chalk it up to the generations of Scots, Irish, and pioneers in my family - we're more known for our obstinacy than our forgiveness. So I've gone another route.

I may not be able to change the past, but I can sure as heck change the future. I can keep up to date with the research on Celiac Disease that's coming out, so I know how to keep my family safe. And I can reach out to others so that unlike my family, they don't have to suffer due to their doctor's ignorance.

So now, oftentimes if I'm stuck in a grocery line, or waiting for something to load on a computer with a clerk, a phone representative, whatever, then I'll mention the disease. Usually, I'll just ask if they have any relatives who are tired all the time, get sick a lot, or have a lot of tummy trouble. And if yes, I'll mention getting tested for Celiac Disease.

I'd say maybe 1 out of 5 times I get someone who says yes, and is interested. For themselves, or a friend, or a relative, usually.

And then sometimes, I get someone like yesterday. I'm waiting at the bank for a computer to finish up, and when I start my 'known anyone sick' spiel, the bank employee pauses. He starts asking about other symptoms. As I'm rattling them off, his eyes are getting bigger, he's ignoring the computer and completely focused on me, and he finally stops, hunts down a pen and paper, and starts asking about how to spell the disease and how you get tested.

Turns out, every single symptom I mentioned, he has.

I know this may not be what is causing this young man problems, but it might be. It has given him hope, and something new to explore that could completely change his life. And that helps him while assuaging some of my own grief and anger.

To date, I've actually had a few folks come back to me who got tested solely due to my sharing this information with them, and they HAD Celiac Disease. One woman's doctors had completely given up and assumed she was not going to live for much longer. That one conversation with me got her diagnosed. She was getting better for the first time in decades.

That's huge.

I know I'm not helping in a large scale way. I am not starting any large organizations, or even in participating in outreach programs. I think they are great ideas, but I think others are doing a much better job in that area than I could. I'm only starting small, here in my community.

But late at night, when a part of my body that has been damaged by all these years of misdiagnosis is acting up and makes it hard to sleep, this helps. I can remember that I probably wouldn't be so frustrated if my own problems hadn't gone on for so long. And if that hadn't happened, these people's lives would have been very different. This woman's life might have ended years before it should, all for the lack of one conversation.

What we say matters. I hold onto that and try my best to think about what I can do now, in the mental place where I am due to what has gone on in my life. And I can help. I can get better. I can advocate for my friends and family in the medical field where they are not receiving the treatment they need.

I can do this. :-)

1 comment:

  1. I would be happy to publich your comment on sulfite sensitivity on my blog, but you posted it to the blogger legacy site rather than the Wordpress site: