Advocacy & Awareness: We Look Good!
“Well, you look good!”
If you’re like me, you’ve heard that phrase more times than you can count. That’s because gastroparesis is typically an invisible illness. Regardless of how horrible we feel on the inside, most people with GP don’t look sick on the outside. In fact, most of us look pretty darn healthy!
Still, most gastroparesis awareness projects that I’ve seen are focused on things like starvation and feeding tubes. I understand that these are meant to grab attention and highlight the terrible nature of gastroparesis, but the majority of GPers aren’t on a feeding tube and most of us, well we’re likely under nourished, don’t look as though we’re starving. So while these efforts may garner some attention, they don’t address — and may even perpetuate — the belief that people who look that good can’t feel that bad.
What’s more, as I learned on Capitol Hill, the allocation of funding and research for medical conditions has little to do with the severity of the condition or even how many total people are affected. We don’t really have to convince people that gastroparesis is a horrible condition. We just have to stand together and ask for what we need (more research funding for starters) — loudly, consistently, and in a coordinated fashion.
With all of this in mind, I’m putting together a new gastroparesis advocacy project. One that represents all GPers, whether we look sick or not, who need and deserve progress to be made in the awareness and treatment of this condition. Here’s how it’s going to work: you send me a picture of you, looking the way most people see you. I’ll create a video showing the real faces of GP along with facts and info about the condition. And then we’ll spread that thing like wildfire. We’ll make some noise for GP in 2012 and we’ll do it in a positive, proactive way.
Want to be a part of it? Email your photo to faces@crystalsaltrelli.com before January 31st.
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9 Responses to “Advocacy & Awareness: We Look Good!”
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I think this is a wonderful project crystal! Can’t wait!! Most people I know, including myself didnt even know what GP was until I got it. And even now after explaining it several times most still don’t understand. I am with you,100%, let us know what to do!
Love the idea. You are so correct in that we don’t LOOK sick, but boy do we feel sick. It’s hard to explain to someone that it’s not just ONE thing that makes us feel so “yucky” and it might not be the same things all the time that do. It’s seems to be so confusing and hit or miss some days as to what effects us. You do a fantastic job of bringing light into our somewhat dark days, that I’m sure you will do the same for those who need to understand GP. Thank you for all that you do.
May 2012 be filled with lots of love and happiness filled moments.
First of all – gorgeous picture. And good project – you have my support. It really is a struggle to deal with GP and hard when people are dismissive of it when you look fine. That I have lost 25 pounds in a month is scary to me but a non-issue to those who think a thinner me looks better. Thanks for all you do and Happy New Year.
This is a great idea and I will be sending a picture
as soon as I can thank you Crystal for constantly
thinking of ways to help the gp community get the
help we need you are wonderful.
Mechieal
Your the BEST! thank you for being our advocatory for All of us GP suffers, Your so right looking at some of us, those that don’t understand the disorder, think we look fine, not sickly, or that since we don’t complain about our pain.. so that means we are OK, ( what do you have to complain about least you can eat..) I think we should educate those that don”t understand or just see it as a normal GI issue, We need to plant the seeds to our gov, and the world that this just not a disorder, but the ” invisible pain, invisible disorder” I will love to send a picture and be apart of this Advocacy project…….. here’s to a more productive year for all GP s suffers and Happy New year to all and Crystal you look beautiful, and your a beautiful person in the inside as well.! Thank you! Melissa C
Thank you again for all you do – Happy New Year. I will get one of my holiday pictures to you – How about a before and after picture, My facebook picture is me last year 40 pounds heavier. When I saw one of my pictures during the holdiay – I was “Oh my God do I look that bad?” Mom-just said the Tshirt doesn’t help.
Wonderful idea. Count me in for any thing I can do to help.
I was just diagnosed with GP on 1/12/12 and your website has been a god-send. I’ve been struggling with symptoms for what seems like forever and am so relieved to have a diagnosis – even if there is no cure. It is so empowering to have information to read, a diet to follow, and learn from the experience of others. I’ve spent countless hours on your website & blog already. Thank you from the bottom of my heart for being so dedicated spreading valuable, credible knowledge about GP and advocating for research. I am a Certified Health Education Specialist and didn’t even know about GP until I had symptoms & fought to be diagnosed. As someone who is trained in behavioral health change, I know I can take control of my life and improve the quality of my life now that I know what I’m dealing with. You & your readers have kind of become my instant support group until I can educate my family & friends. Thank you!
Crystal
I wanted to thank you for dedicating both your good days and bad to all us GPer’s. You have provided us with good solid information. I have suffered for many years but currently am taking Domperidone and am doing lots better! I will be sending a picture for your use.
May God give you the strength to carry on!
Joanne Hutchins