Need To Know

A turqoiuse-green eye with the HEDS Up! feature title 'Need To Know' and 'Compassion comes from understanding. Open your eyes and heart to what people with Gastroparesis need you to know'.

#KGNeedToKnow

Having any permanent illness is hard physically.  You may understand our symptoms, but grasping how it is for emotionally can be difficult.  Here #YouSeeUs interviewee Kristin shares what she needs you to know about living with Gastroparesis. 

We are not faking how much pain and nausea we have.  We are actually downplaying how sick we are and how bad we feel. 

You wouldn’t believe the amount of pain and nausea (among other symptoms) we experience daily. 

Nobody understands what we are going through unless they have gone through what we have. 

We feel isolated and lonely. 

Sometimes we just want you to come over and hang out with us.  You don’t even have to say anything.  We know you don’t know what to say to us.  That’s okay.  We just want you to be with us. 

We know more about our illness than most doctors do.

There is very little research being done and very few treatments offered. 

We may never get better.  Even if we go into remission for a time, we may (and often do) relapse. 

Because I was okay yesterday (or even earlier in the day) that does not mean I will be okay in a few hours or the next day.  What I could do yesterday may not be what I can do today. 

If I go out today, I may pay for it for days to come. 

My body does not recover as quickly as yours and a simple cold can seem like nothing to you but can be torture for our bodies. 

We literally feel like we have the stomach flu every day of our lives

I only have so many spoons throughout the day and if I use them, they are gone.  The amount of spoons I have can change from day to day.  It’s like an empty battery on your phone. Once it’s gone, it’s gone and you can’t get it back without charging. 

Stop pressuring me to drink alcohol with you and making me feel excluded when I don’t want to because of how much it worsens my symptoms. 

Just because you saw me eating 
one time doesn’t mean I can 
eat the next time you see me. 
My diet and restrictions 
change quite frequently.

Sometimes medications don’t work. 

We hear advice and treatment options all the time.  We don’t want to be constantly bombarded with it.  Our doctors have us on what they believe is best and messing with our treatment plan is actually dangerous.  We don’t want to hear about your mom’s sister’s friend’s child who has the same thing we have (or worse a completely unrelated stomach issue) and how they were completely cured by X, Y Z...We have tried nearly everything and nothing works for us sometimes.  

Different things work for different people. 

We often get sick and it’s not a result of what we ate.  Don’t chastise us if we eat and get sick.  We are human and it gets hard not eating and watching others enjoy food.  We never stop craving it and it doesn’t get easier. Stop telling us how great the food is that we can’t eat. 

Food has become our enemy.  

We don’t get used to the pain and nausea.  The longer it goes on, the more depressing it can be. 

This condition is debilitating.  We would rather be working and enjoying our lives than staying home. 

It’s not good that we are losing at least one pound a week and dropping weight rapidly.  Don’t tell us you wish you had this condition to lose weight or we are lucky we are losing weight.  You have no idea what we’ve had to go through to lose it and we’d rather have the weight than the sickness. 

We are not lazy.  We are fighting for our lives and our heath every single day. 

Don’t stop inviting us out.  Just because we can’t always go doesn’t mean we don’t want to be asked. 

Sometimes bringing a meal for our family (so we don’t have to cook and be around food or use up our spoons) is just what we need.  Also, offering to take us to appointments or do housework is something we crave so much but will rarely ask. 

We will almost never ask for help and if we do yet don’t receive it, we will probably never ask again. 

You’re never too young to get sick. 

You cannot even imagine how much our medical bills are and how often we have to go to the doctor, get stuck with needles, or have to have surgery.  Our lives are consumed by our illnesses whether we want them to be or not. 

Sometimes Cancer is not always worse

We still care about your problems. But please stop comparing them to ours. 

We love you and care about you even if you can’t help. 

What do you wish people knew about life with Gastroparesis or any other Invisible Illness like Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders or Dysautonomia?  

Tell us in links or drop a line to words@youseeus.org, with the subject saying 'Need To Know'.

Written for #YSU by author and #ysuTribe member, Kristin G.
Email media@youseeus.org for syndication permissions.
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