OTHER STUFF

Just...No!

words : Kristin G and #ysuWords

As well as Spotlighting what she most wants people to grasp about life with stomach paralysis (Gastroparesis - GP) in 'Need To Know ', #YouSeeUs joined forces with Kristin to find out about some of the hurtful, ignorant or stupid things people have said to her.

And to explain why, when it comes to saying certain things, it's a case of Just...No!

They also apply to other illnesses.

#ttdJustNo

Try saying

“Well, you’re looking

good for someone

feeling so bad”.

Strangely, some people can feel awkward when talking to humans with bodies that are different to them.

You might not mean to upset, hurt or annoy people living with chronic illnesses and disabilities, so here are some things you shouldn't say, and a few things you could try expressing instead...

“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.

“It could be worse .”

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.

This way, you're still relating, but also acknowledging

that you have no idea

what it's like to have

a paralysed stomach.

“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 the 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 an Ableist world that discriminates against us and complicates our already tough lives.

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 Gastroparesis, 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.

Quite literally one of the dumbest things anyone

can ever tell an

ill person...

“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 EDS /hsd 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...

If we could dance our

Dysmotilities or gym-bunny

our GP away, we would.

Please...Just, no.

“If you just stay busy, you'll feel better.”

Being busy will not cure our paralysed stomachs / Ehlers-Danlos (EDS) / Hypermobility Spectrum Disorder (HSD) / Fibromyalgia / Dysmotilities/Dysautonomia/Mast cell Issues/'Long COVID'...

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. 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 and people with other permanent illnesses 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 Gastroparesis 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 all 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 ignorant. It shows that the person saying, or thinking it, has no understanding of how illnesses work.