This is a theory that could definitely use some input. This is one where most of my thoughts will be opinions. But I hadn't posted in a while. But I figure this blog could also be of benefit for other people to also come up with theories as well. So, here's my thought of the day.
Why is gastroparesis relatively unknown?
For instance, the treatments for this disorder have not even been standardized. You go to one gastroenterologist, and the gastric emptying scintigraphy (study) will be 4 hours long. You go to another and it'll only be two hours long. Medications are different... treatments are different... Nothing is universal, and not much is known about what causes it in some people.
Why is this???
Now, as an opinion, I feel a large part of it is: it isn't very deadly. Gastroparesis has caused casualties, but not in universally large numbers. Gastroparesis only affects 12% of the population. 5 million is a lot of people, but in comparison to the population, it isn't. Gastroparesis is a serious disorder, but so is amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease). Not many people know the symptoms or much about ALS until they get it. It isn't curable and hasn't been overly researched either. The reasons for this: not a large amount of the population ever has ALS at once due to a mean survival rate of less than 5 years. Not enough people have it at once. In comparison to other more serious diseases, gastroparesis is kind of on the back burner.
Most people suffer from this in silence. And that is my other main reason. There are groups of people out there who try to raise awareness about it. But ultimately, social acceptance has resulted in people just suffering in silence. People who are sick don't really like to say they are sick because it makes them feel weak or shamed by society. Too many people in society will tell someone who says they are chronically sick and can't keep food down that it is "in their head," or "they are just trying to get attention." To those people who say the latter, "Yes, we need attention, just not your negative attention." Due to social isolation encountered by people who deal with this, gastroparesis remains a quiet disorder. Not enough people know about it because people who have it, haven't made their voices loud enough to make the deaf hear. And as loud as some people are, and as active as some people are at trying to make this more publicly known, there are so many others who aren't. They are just quietly suffering from it.
I think it is time to quit suffering. It may be hard when you are sick, but I feel the only way people are going to know about this, is basically to get out there and inform people. Everyone should find ways to make this disease more well known. After all, there are 5 million people with this disorder. Word must spread, and it starts with everyone with this. And even people who have loved ones with GP; they should get involved too. This is a call to arms.
I can sit here and make theories all I want. I try to inform people within the forums with what I know. However, if there is enough public outcry about this, I feel it'll take center stage. So, to formally declare this as a "theory." I theorize:
Gastroparesis isn't well-known because sufferers are usually quiet about it. Gastroparesis isn't fatal in MOST cases, but it does significantly reduce the quality of life for anyone who has it. Quality of life isn't important to some doctors out there, all that matters is life and death.
Feel free to post your theories. I'll be sure to set it up so next time people comment, my email gets alerted (if I can).
Nathan S. :)
