Gastroparesis, a debilitating and destructive chronic condition

Natasha Jones

I suffer with Gastroparesis. A debilitating and destructive chronic condition that has ripped me apart. I have lost my sense of self, my ability to have a job, my brain function is slower, my body is in pain every minute of every day, I can’t be spontaneous, I take bouts of medications all day every day, I feed through a tube in my nose into my bowel, I will soon have surgery.

The treatment options are abysmal. The motility medications rarely work and often make us worse. The only pain medication available is both addictive and slows down motility but we have no other option. The anti-sickness medications rarely work unless administered through IV but a lot of us do not have access to that.

I’m only 25 and therefore my specialist refuses TPN. TPN itself causes a huge amount of issues. There’s no one looking for a cause, and there’s no cure. We are tubed, stuffed with medication and left to rot at home. We see specialists twice a year due to overwhelming lack of funding. There’s no mental health support and none of the therapy treatments apply to our condition. We are shoved aside, blamed for our condition, accused of lying, accused of drug seeking, accused of starving ourselves. All this is soul crushing. We get treated so poorly, despite the fact that we have an organ that doesn’t work properly.

Imagine if it was your heart, kidney, lungs, you’re treated properly. You’re treated with respect. But when it’s your stomach? You’re left to deal with it yourself, like being thrown to the gutter. It’s absolutely appalling. We are dying, slowly, we are getting more sick, slowly, we are in pain, all the time, we deserve better! Across the whole world we deserve better. We deserve recognition, better treatments, less ridicule and we deserve respect. Could you imagine living everyday with food poisoning, every day, for the rest of your life? Just imagine it. Imagine how that would feel. Would you be able to work? Would you expect to be treated better, properly? This is our lives. All day, everyday! We deserve better.

Gastroparesis has taken so much from me but I will refuse to let it take all of me. I am a warrior and a fighter. I fight everyday, we fight everyday. More than a lot of people could comprehend. I try and raise awareness because we are treated like an afterthought! It’s only our Gastroparesis groups and warriors that are fighting for awareness! We are the ones powering through for better treatment, better mental health support, better understanding, less ridicule all whilst suffering tremendously. This condition can be all consuming, soul crushing, mind altering, painful in every aspect and so unbelievably destructive. But through it we find strength we never thought we could ever have, we gain a family across the world that are there for you and understand you 24/7, we find new comforts and hobbies that we would never have considered before, we establish who is truly there for you, we push boundaries that we never thought were possible and we find a new respect for just how much the body can persevere. We are warriors. I am a Gastroparesis Warrior.

loading spinner
Print Friendly, PDF & Email
About the author: Gastroparesis: Fighting For Change Admin

We created this website to provide the public with additional information regarding Gastroparesis. It is our goal to connect users with our Facebook advocacy group, “Gastroparesis: Fighting for Change.”

Our Gastroparesis: Fighting for Change Facebook group was formed to unite people with Gastroparesis and other digestive and motility disorders to work for change. It is not a typical GP support group, as we do not discuss personal medical issues. Rather, we established this as a place where members can discuss ideas regarding our mission, vision, goals, needs, services, and resources to work toward solutions. So if you want to make a difference for our GP community, we encourage you to share your ideas! Additionally, we need you to help us fight for changes in legislation! Also, you can help raise funds! Finally, you can help spread awareness! Please join our main group. We would love to have you!

You can find links to our Community Page and our Advocacy Group on our Resources Tab.

In order to accomplish our goals, we will be sharing many ways you can get involved on our Campaigns Tab.

Leave a Reply

Please Login to comment
  Subscribe  
Notify of