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An eloquent explaination of what it's like to have digestive tract paralysis

Tuesday, April 23, 2013

I've had an idea for a blog rattling around in my head for weeks now, but I haven't been able to thoroughly put into words what I want to say. The topic seems simple, but the response is not. While I continue to work through it, I wanted to share something very important to me, but something many people have absolutely no understanding of.

If you know a little something about me, you know I have multiple severe medical conditions. It sucks. That sums it up, right? It totally sucks. (For those who don't know anything about me, please read my sparkpage.) But while several of my diagnoses are rare, one of the worst is so ridiculously common (1 in 25 people in the US are afflicted) while being so disgustingly misunderstood or flat out unknown by most that it'd be laughable if it wasn't so tragic. After all, isn't it true that one of the most basic human functions is to eat? How can one survive without being able to eat? If someone isn't eating, it must be a mental problem, not a physical problem, right? Most people can't even consider the possibility that something could go so wrong in the body that eating is no longer an option. Just because many people don't know about gastroparesis doesn't make it any less dangerous.

G-PACT is a non-profit organization supporting and fighting for people with digestive tract paralysis. The founder, Carissa Haston, is one of TENS OF MILLIONS of people who are living with DTP, some for many years. Please read this blog/note she wrote to help others have a chance to understand what it is like for us:

www.facebook.com/notes/g
-pact-gastroparesis-patien
t-association-for-cures-an
d-treatments-inc/just-imag
ine/10151541970719337


Please note that there is a WIDE range of symptomology and presentations of gastroparesis, so what is true for one person is not true for another. Still, many of us hide what we're truly feeling and dealing with in order to make others more comfortable. (After all, most of society revolves around food so we must learn to accept our misfortune and watch others partake in the joys of being 'normal'.) Because of another's naivety I will often be cautious about how I present myself. It's not fair, but it is what it is.

But so help me, if I have one more person tell me that I'm 'lucky' to look like I do, that I don't understand physical or emotional pain, I don't know what it's like to be misunderstood or bullied, or that I need to suck it up I am going to lose my patience and go on a tirade of epic proportions. I DO NOT DESERVE TO SUFFER EVEN MORE THAN I ALREADY DO BECAUSE OF SOMEONE ELSE'S PREJUDICE OR IGNORANCE!

Thank you for your consideration. (Sorry I yelled; I get incredibly frustrated when it comes to how unknown and misunderstood GP is and the actions/words of some people in relation to this condition.)
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  Member Comments About This Blog Post:

MISSCUS 5/21/2013 8:20PM

    Even if you are gorgeous, and you are really gorgeous, it sure takes a backseat when you feel bad, and not even be in the presence of mind when you feel really really bad. Looks don't mean a thing when you are ill. Looks are truly deceiving!! I have NEVER had normal digestion. I have ALWAYS suffered pain for hours and hours after eating solid food. But yet I sit there looking normal. Others have no clue.....after nearly a lifetime of dealing with the pain and discomfort, one tends to not say much so as not to make a big deal about it. That makes us also look well when we are not. As a RN, I saw firsthand that most patients who are very ill or even very near death, do not "look" sick.

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RISINGBLUESTAR 4/23/2013 5:58PM

    I really sympathize with you. I don't understand what it's like to have those conditions but I do understand what it is like when doctors don't have a clue or people think you look fine so you must be fine. It's all bull. One thing you are not is lucky. It is NOT lucky to have restrictions with your eating or for something that should be so simple to cause pain. How ignorant for someone to be so dismissive. You don't have emotional pain? How would they know? Not only do medical issues cause emotional pain (so much anxiety and depression but life in general can be stressful anyway.
It's great that you aren't overweight but it's not great that you have to struggle to be at a healthy weight and not underweight. People just see you and don't understand a lot of what you are going through. Sadly, a lot of people don't even try. You can try to explain it over and over but sometimes, it never sinks through.
If you want to get through to someone, sometimes you have to play down to their ignorance. If someone who is overweight tells you you are "so lucky", explain to them that you feel they are lucky because all they have to do is eat less and exercise if they want to be thin. That's not always the case but that would get the point across. They are basically simplifying your very complicated situation so why not simplify what challenges them? It's not a cruel thing to do. It just makes things crystal clear. Overweight doesn't always mean unhealthy and thin doesn't always mean healthy OR lucky either.

The best thing you can honestly do is just put your energy into feeling better and concentrating on the positive and supportive comments.
Sometimes, it's hard to ignore ignorance but by spreading the word and talking about your conditions is a great way to spread awareness and at the end of the day, if that's all you can do, that is still a great accomplishment.

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MOM2ACAT 4/23/2013 5:52PM

    I totally understand the frustration.
Even after I explain my condition to people, there are still people that think that all I have to do is eat yogurt and I'll feel better. I'd like to slap them sometimes! I blame the company that makes Activia yogurt for pushing it as a "cure" for digestive problems.

I get tired of people in general trying to give me advice about my diet. I don't mind feedback from other people with GP, I just don't want or need the opinions from people with normal stomachs that know nothing about our conditions.

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