"Just...No."

#JustNo

“You’re lucky 
you’re losing weight.” 
You’re lucky you can eat.  
I could starve to death.   
It’s not a diet plan. 
As well as Spotlighting what she most wants people to grasp about life with Gastroparesis (GP) in 'Need To Know', we joined forces with Kristin to find out some of the hurtful, ignorant or stupid things people have said to her, and to explain why, when it comes to certain topics, it's a case of...Just, no! 

*They also apply to most other Invisible Illnesses.

“Well...You look great.” 
What’s wrong with this? 
If it comes after us explaining our illness to you at some point in time, or if you know we’re feeling like crap and struggling, we can feel kind of undermined.  Like you haven’t really heard or understood how hard it is for us and how bad we feel.  

When you have chronic illnesses, although you do care about your appearance, in the hard times, it can seem superficial, and we don’t care what we look like (only others see us) because inside we may feel like we’re dying, and then appearance becomes utterly superficial - and so does this comment.  Annoyingly so.  

We know you can’t ‘fix’ our bodies.  We need you to just hear us.  

Try saying “Well, you’re looking good for someone feeling so bad”.  

That way, you get your compliment in and maybe make us smile, and we know you have listened, understood and we feel validated.  

Something sadly lacking for people with disabilities. 



My stomach is paralysed. 
Tell me how much worse it needs to be before you make that ridiculous statement…

Just, no. 



“Others have it worse than you.” 
That may be true.
But my stomach is paralysed.
That’s pretty bad.   
How much worse do I need to be to stop hearing this? 
Dead?

Please...Just, no. 

“I was going to text/call/message 
to see if you were coming, but I didn’t 
bother because I knew you wouldn’t come. 

You never do.”
“I was going to text/call/message to see if you were coming, but I didn’t bother because I knew you wouldn’t come. You never do.”

Because we physically cannot say yes due to being so ill, or too exhausted and recovering!

But please keep inviting us, as one time, we might be well enough to say yes- after all, we want to socialise, but it's really hard to when you're ill all the time. Try it next time you're knocked off your feet with a bug or really bad hangover...
“You need to get out more.” 
Maybe we do, but we point you to that comment just above this one. 
We physically cannot due to being so ill, or too exhausted and recovering, or in the avoidance of pain and other symptoms.

'Friends' tend to disappear when you're ill with no chance of getting better.  Maybe we can't get out, and we could do with you coming over and staying in with us for a sleepy movie marathon.  

Maybe we don't want to go out because we're fed up of batting off dumb comments like this one, and the difficulties that can come with being disabled and navigating outside in a world not designed for us,

When it comes to sweeping statements about a person's life when you're not in the picture from day-to-day?  
Seriously, just no!



“Try exercising.”  
There are many causes of GP, and no cure.  Not even exercise.  
Or losing weight. 

For some people who have serious issues maintaining their weight, especially if they also have something like EDS/HSD, exercise is out of the question due to extra unwanted weight loss, fatigue, pain or the potential of injuries like dislocations and subluxations. 

If we could dance our Dysmotilities or gym-bunny our GP away, we would.  

Please...Just, no. 



“I used to take pills all the time.  [Insert suggestion] helps/helped me, so I don’t take any meds now.”
Gastroparesis means our stomachs cannot digest things and some of us rely on a feeding tube**.  
Our nutritional intake is carefully balanced and produced, even if we can drink our liquid feed, but especially if 
we're Tubies. 

A lot of people with GP and Ehlers-Danlos and Dysmotilities also have problems absorbing the nutrition that does successfully make it into our digestive system, so all the vitamins and supplements on the planet may either not be suitable, or simply not appropriate.  



“Try this supplement.” 
We refer you to the above comment...
Just, no.
“You're lucky you're losing/you've lost weight.”
You’re lucky you can eat. Our stomachs are paralysed**. 

We could starve to death. 
It’s not a diet plan. 

For your own sake, just...No.


“You need to stop taking so  much medicine.” 
Unless you've been through our medical records with a fine toothed comb, and attended each and every one of our appointments, when it comes to commenting on the types and amount of medication we take, just, NO! 



“Doctors should take you off all your meds and you’ll probably feel much better. They’re probably causing your problems.”
Thanks, Einstein.
See the above point and add another huge just...No!



“You talk about your sickness too much.”
Something like Gastroparesis is often the biggest and most traumatic thing our lives (or one of, if you have other illnesses too, as most of us with EDShsd do).  

It impacts on every part of our lives and bodies' systems.  Saying this is so belittling of what anyone with an invisible illness fights through everyday.

If you're bored, try understanding that there are psychological benefits to expressing our pain - physical or emotional. And try imaging what's it like living with a stomach that doesn't work** - food is everywhere!  It's such a big part of our social lives, not to mention the fact humans need it to survive.

Sometimes, we talk about our illnesses because we're trying to make you understand how it effects us, our families, friendships, career, freedom, ability to eat, drink, wash, stand, sit...getting the idea yet?

And maybe you need to develop your empathy the same way we have developed the strength to deal with our illnesses on a daily basis...



“My stomach acts up sometimes too.”
We get that you're probably trying to empathise and show some support by saying things like this, but having a tummy bug or even IBS is not the same as having a paralysed stomach.  

Viruses pass and people with IBS do not generally end up needing feeding tubes.  

Try saying something like, 'My stomach acts up sometimes, and that's bad enough.  I can't imagine what it must be like to have Gastroparesis'.

This way, you're still relating, but also acknowledging that you have no idea what it's like to have a paralysed stomach. 



“Hope you get better soon.”  You mean well, right?  
So what’s wrong with this? Gastroparesis, like many other invisible illnesses, is never going to get better and go away. There may be easier days and harder days. if we have told you about our permanent illnesses and you say this, then to us, it feels like you haven't listened or understood a thing we said. 

Just...No.

Try saying “I hope it eases” or "I hope you have a better day tomorrow" instead.  Saying 'a good day' can be equally as irritating, as many people don't have 'good days'



“You’re too young to have that.” 
Quite literally one of the dumbest things anyone can ever tell an ill person. 

Not all illness are associated with age.  

Just...NO!
If we could dance our Dysmotilities
or gym-bunny our GP away, 

we would. 
                    
                                Please...Just, no.
“If you just stay busy, you 
will feel better.”
Being busy will not cure our paralysed stomachs** / Ehlers-Danlos (EDS) / Hypermobility Spectrum Disorder (HSD) / Fibromyaglia / Dysmotilities...

And while we cannot eat or digest properly and have trouble getting calories in to our body, being busy may make us worse. 
We have to choose how we spend our energy wisely, and being this ill is pretty much a full-time occupation.   

We don't laze around all day eating snacks, binging on our favourite television programmes and loving life...



Finally, many Tubies (people with feeding tubes) are hooked up to their liquid feed for hours.  Maybe the majority of the day. 

You wouldn't expect a person hooked up to Chemo or any other IV to 'stay busy'.  

Why would you expect Tubies to? 



“If you just stopped eating X/Y/Z...” 
Gastroparesis means stomach paralysis**.  
It doesn’t matter what we eat, though some people can eat small amounts of certain foods, but that involves trial and error.  

In Ehlers-Danlos/HSD bodies, where there is an association with GP and Mast Cell Activation Disorder (MCAD or MCAS), a food may be safe one day, but cause potentially life-threatening another day. 

So, no.  Next!



“Well, what did you eat?” 
This implies blame. 
It’s another way of saying ‘Well if you didn’t eat that, you wouldn’t be puking / in pain / swelling.’  

It’s Victim Blaming and inappropriate.  

YOU try not eating month after month after month when you’re starving and your body is crying out for nutrients and there is food alllllll around you...  

Just, no, no, NO!



When I tell people I probably can’t have kids, they say: 
“Once you have them it will be okay and you can handle it. 
You'll be too busy to be sick.”  
There’s too much wrong with this to cover it all, but to say someone will be ‘too busy to be sick’ implies that person is choosing to be sick. 

This is invalidation and, again, smacks of Victim Blaming, something many of us with invisible illnesses experience in a medical setting time and time again.  It's also unintelligent and shows that the person saying, or thinking it, has no understanding of how illnesses work. 

Seriously, just...No.

Sometimes it’s what people  
   don’t say that      
              hurts more.
    A simple...

  • ‘How are you doing?’,
  • ‘Can I do anything to help you?’
  • ‘Do you need anything?’
  • ‘I’m here if you need anything’
  • ‘Do you need me to come over or pick up your anything for you?’
  • ‘How did your test / surgery / appointment go?'
Can make all the difference 
to us, and put a real 
smile in
      our hearts
if not on our face. 
Even if we turn down offers of help and company, it’s still valuable to us 
to be asked and to know we’re in your thoughts. 

**Did you get bored of us repeating that our stomachs are paralysed? We did too - imagine what it's like to have to live repeating it like this...Just, no!
This feature was a collaboration between 
#ysuTribe member,
Kristen G and #ysuWORDS 
email media@youseeus.org for syndication permissions 
A banner saying 'Have you been #CreamedForGP?, across the green #ysuSmiley, who's smiling and pointing at you. banner links to facebook.com/gastroparesispiefacechallenge.
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