It Could Be Worse

A bunch of white Chrysanthemums wrapped in brown paper with HEDS Up! feature title 'Could be Worse' and 'By all means cheer us up with flowers but, as guest writer Kristin explains, never tell us...' all in green.


Many with chronic illnesses are told “It could be worse” or “At least it’s not Cancer.”  Not only does this diminish the severity of our illnesses but it also makes us feel like you don’t care and it completely belittles our suffering. 

When I was diagnosed with Idiopathic Gastroparesis, nobody’s life was affected other than my immediate family’s and my own.  Nobody called to say they were sorry.  Nobody sent over meals. 

Nobody came over to clean my house or keep me company.  My diagnosis impacted virtually nobody because they didn’t know what a diagnosis of Gastroparesis meant. 

Frankly, few took the time to even ask or Google it. 

Yet when people are diagnosed with Cancer or a terminal illness, the response from others is vastly different. Everyone calls and texts to see if you are okay.  Everyone constantly tells you how sorry they are.  You are asked how you’re doing on a daily basis.  People bring casserole after casserole and make sure you are well fed.  People come over to clean your house and take you to appointments.  They will do anything they can to help. 

But I’m here to tell you that my chronic lifelong illness affects my life in every single aspect and it will affect me for the rest of my life. 

It is not something that will ever stop affecting me.  I am only 27 years-old and was diagnosed when I was just 24.  I have been afflicted with stomach issues since I was 19.  And I will live like this FOREVER.  My Gastroparesis will never go away. 

To be honest, there have been many occasions when I have wanted to die - when I wished that my illnesses were terminal (I have five chronic illnesses and pituitary tumours in addition to Gastroparesis).  There have been many times when I wanted to just give up and die; death would be a sweet release in comparison to suffering for your entire life. 

And guess what?  Gastroparesis kills people too.  More than 30 people in my Gastroparesis support group of 2,600 members have died just in the past eight months.  Those with Gastroparesis cannot eat or drink, or cannot eat or drink well. They end up malnourished, dehydrated, and can lose weight at an alarming rate.  

They are literally starving yet receive little support and attention, even from doctors. 
Please don’t think that I am belittling terminal illness or Cancer in any way.  They are both horrific and have taken far too many lives. I am not downplaying the severity of either. 

I have had family members diagnosed with Cancer and it is a devastating and heartbreaking illness.  I am deeply saddened by the effects Cancer has on so many lives. 

Yet I am only asking for the same support and understanding given to those suffering from other illnesses. 

I want others to understand that Gastroparesis affects my life in every way imaginable.  

Gastroparesis kills people too.  I am only asking for 
the same support and understanding given to those suffering 
from other illnesses. 

It has stolen my ability to eat.  It has stolen my ability to socialise.  It has stolen my idea of what normal is to the point that I don’t even remember what it is like to feel healthy. 
Gastroparesis has stolen my job. It has stolen my youth. It has stolen the possibility that I will most likely ever have children. 

It has stolen my life. 

Yet the day I was diagnosed changed nobody but me

Seems Like Yesterday
I remember that day like it was yesterday - Wednesday, April 30, 2014.  

It was the day that I thought I would finally receive help after five years of suffering.  But that’s not what happened. Instead, I was told I would live with this devastating illness for the rest of my life. 

Nobody told me how much Gastroparesis would change my life.  Nobody told me that it would cause me to lose my job at 25 and become completely disabled.  Nobody told me that the government would deem me too sick to drive and put me on medical restrictions yet tell me that I was not sick enough to receive help.  

I am apparently well enough to work yet too sick to operate a vehicle to drive me to the illusive job I will never have. 

Nobody told me that Gastroparesis would come with a laundry list of other chronic illnesses.  Nobody told me that I would have more tests and surgeries at 27 than most people have in a lifetime.  Nobody told me that I would feel almost no pain when given an IV or having blood drawn, as it is so frequent that it barely affects me anymore. 

Nobody told me how many hospitals and doctor’s offices I would visit.  Nobody told me that I would lose faith in doctors and realise that they can’t always help.  Nobody told me that my doctors would soon tell me that nothing more could be done.  Nobody told me that I may end up on feeding tubes and will face the daunting reality of them for the rest of my life.  

Nobody told me that the doctors would tell me this was my only option left. 

Nobody told me that I would barely be able to leave my house and that I would see my doctors more than my friends.  Nobody told me that I would lose friends - that I would lose relationships with family members I thought cared about me.  

Nobody told me how heartbreaking and devastating it would feel to have your friends and family stop caring.  Nobody told me how many tears I would shed.  Nobody told me how much pain and nausea I would suffer on a daily basis.  Nobody told me that it would never end. 

I have been on every medication for nausea and my doctors have now told me that there is nothing more that can be done for my

Nothing more can be done for my daily nausea. I'm 
in pain every day. I have 
had five surgeries and 
14 endoscopies. Yet I'm told “It could be worse.” 

severe daily nausea. I am in pain every single day of my life.  No amount of painkillers can alleviate this type of pain. I have almost been tube fed twice because I lacked the ability to tolerate food and liquids orally.  I have had five surgeries and 14 endoscopies.  Yet I am told “It could be worse.” 
Feeding tubes are extreme measures that doctors don’t offer lightly.  Being told that you may need them to sustain your nutritional intake and essentially your life is terrifying. 

Yet still, nobody recognised the severity. 

When you have a terminal illness or Cancer, it’s all people talk about.  They continually ask you how you are doing and if you need anything.  It’s socially acceptable if you discuss your illness as it’s deemed as something serious and life changing or even life threatening.  But with chronic illness, this is not the case.  

Most people seem to care for about five minutes.  When they realize you will never get better, most stop caring. 

They stop asking how you are doing.   They don’t ask you if you need anything - if they even did in the first place. And you are told to stop talking about your illness.  You are told that you are negative if you so much as bring it up. 

It is as if our chronic illnesses do not affect our lives enough that we even have the right to talk about them.  I am not my illness.  But my illness has changed me.  It has changed my life. 

I may not have a terminal illness, but I have a chronic illness that claims lives daily.  I have a chronic illness that stole my healthy body, my youth, my job, and my friends and some family members’ care and support.  I have a chronic illness that doesn’t illicit most people’s compassion or understanding. 

Imagine the last time you had the flu. Remember the nausea that you felt - as if the entire world was spinning and as if you would throw up at any second. The smell of food was revolting but people around you continued to eat and continued on with their lives. 

Yet people also helped you.  

They took care of your kids, did the dishes, or helped clean the house.  They told you that they hoped you felt better and that they were praying for you.  Your employer understood and allowed you the time off you needed to heal. 
Now imagine if you lived that way every day.  Imagine if you felt nauseous and had pain every single day for the rest of your life but without the care and support of others or without the support of your job. 

How would you feel?  

People around you will continue to eat.  They will continue to enjoy their lives.  Even if it makes you physically ill, they’ll eat right in front of you - foods you will never again enjoy.  Many with Gastroparesis are on a liquid diet, or alternate between liquid diets, soft food diets and solid food diets.  Some are even tube fed or on TPN (Total Parenteral Nutritionthrough the veins, often via a Hickman Line into the heart).  Yet even if they can eat solid food, few with Gastroparesis will ever be able to eat normally and have ever changing dietary restrictions. 

I continually have to go to parties and endure the smell of food I cannot eat; people constantly discussing how great it tastes and how they wish I could eat it; people asking me if I want food that I cannot have; longingly watching people eat as I sip my Gatorade...

Even though I have lived with this for over three years and have suffered symptoms even longer, I don’t ever stop wanting to eat.  I simply hate what food does to me.  Imagine if your favourite foods became poison to you - if you were allergic to all the foods you once loved.  Or worse, you were allergic to all food and fluids!  That is what a life with Gastroparesis is.  It is like a perpetual allergy to ALL food and liquid.

To those of you with Gastroparesis, I am here to tell you that it does get better.  Maybe your symptoms won’t get better, but your ability to deal with them does.  You may feel sick every day for the rest of your life, but I am here to tell you that there is still hope. 

There is still hope for a life that is not consumed by Gastroparesis

To those of you with Gastroparesis, I am here 
to tell you that it does 
get better. Maybe your 
symptoms won’t get better, 
but your ability to deal 
with them does.  

Phoenix From the Ashes
I have gained so much from Gastroparesis.  There are joys in my life that I would have never known if it weren’t for this terrible disease.  

Since I was eight years-old, I wanted to be a writer.  It was my dream.  A dream I never spoke. I told very few people, frankly because I didn’t believe in myself. 

In college, I majored in English with a concentration in Professional Writing and Rhetoric.  Yet what I really wanted was to be an author, not a professional writer.  I wanted to major in fiction, but I was too scared.  

Authors don’t make money unless they’re best sellers, I thought.  You’re not good enough.  You’ll never make a living.  You’ll never even publish a book. 

So with these thoughts, I conservatively chose a major that had more potential of me actually getting a job upon graduation. I then chose the same Master’s instead of the MFA (Master’s of Fine Arts) I really wanted.  I wrote a novel throughout college, my graduate degree, and my first year of work.  Yet I was too scared to send it off to a publisher. 

When I became severely ill, I found myself unable to work. Gastroparesis pushed me to send out my novel.  And a Christian publishing company decided to take a chance on me and published my novel in February 2017. 

As my health took a quick downward spiral, I soon discovered who really cared about me.  And to my surprise, my family cared about me more than I ever realised or could have imagined.  My Mom travels to every one of my doctor’s appointment, surgeries, and procedures, driving up to five or six hours a day with me!  

She has come over to cook for me or clean for me when I’m too sick to do these on my own.  She has even brought over nail polish and facials to take me away from thoughts of my illness for even a few minutes.  My Dad is my constant prayer warrior and cheerleader, and both of my parents are always there to support me financially should the medical bills become too steep.  He has cried with me, cried for me, begged God for healing for me.  And he has never stopped. 

My sister calls me and listens to me for hours when I need to talk.  She comes over to keep me company despite her terribly busy schedule as a PT student.  My husband supports me every single day and has loved me in sickness and in health.  He has seen me at my worst and loves me even more deeply because of it.  He has even started a fundraiser at his work for Gastroparesis

My extended family prays for me daily and asks me how I am doing regularly.  My in-laws have offered to take me to appointments and my sister-in-law has been one of my biggest supporters and comforters.  My brother-in-law personally knows what I go through from his own experiences and I cherish the hours we have spent empathising with one another.
I would have never have known how much people care about me if it were not for Gastroparesis. 

I have also learned to advocate for myself and research my own treatment plan. I have learned not to let doctors dictate my treatment and to take action myself. 

I have developed a relationship with many Gastroparesis warriors and glean support and comfort from them on a daily basis. 

To those who have said or 
think chronic illness could 
be worse remember - people with chronic illness 
will rarely get better. 

I have also had to let go of people who negatively impacted my health and don’t support me on my journey.  While it was sad to see them slip out of my life, it was for the best.  You don’t need anyone in your circle who treats you without compassion or who serves only to worsen your health. 

To those of you who have said or who think chronic illness could be worse, please remember that people with chronic illness will rarely get better. 

Remember that most chronic illnesses are incurable and terminal illnesses are incurable.  Cancer can go into remission and those with chronic illnesses can go into remission (this is not the same as a cure).  Some die from chronic illness.  Some die from Cancer (or Chemo).  While the diseases are not the same, they should be treated the same in the sense that people should have just as much sympathy, compassion, understanding, and support for those with chronic illness as they do for those who have a terminal illness or Cancer. 

You have no idea what someone is going through, so before you judge put yourself in their position.  No two people are alike and no two people handle situations in the same way.  Nor are two illnesses alike.  It is not fair to constantly compare chronic illness to terminal illness or Cancer.  They are two vastly different sicknesses.  They affect people in vastly different ways. 

Those with chronic illness need your support.  They need your help.  They need you to offer to cook for them or their family.  They need you to offer to clean for them or take them to appointments.  They need your help but will rarely ask for it because they feel like you won’t understand.  They feel weak because of the way chronic illness is treated and how it is thought of as less serious than terminal illnesses or Cancer. 

So instead of saying “It could be worse” or “At least it’s not Cancer,” think about how these words can affect someone living with a serious chronic illness.  Remember that these illnesses never go away and these people will likely suffer for their entire life. 

Consider what your life would be like if you were diagnosed with an illness that never went away.  Think about how you would feel if you were told that it could be worse.  Choose your words more carefully as people suffering with chronic illness are vulnerable and your words can seriously hurt them.  I can’t tell you how many nights I have spent crying because of something insensitive someone said to me regarding my illness. 

Remember that chronic illness is different than terminal illness or Cancer but it is not any less severe or devastating. Both change and claim lives.  Until you’ve walked it, don’t judge it. 

To those of you living with Gastroparesis or another chronic illness like Ehlers-Danlos Syndrome and Hypermobility Disorders, don’t ever lose hope. 

Don’t ever stop advocating for yourself.  Don’t ever listen to those that tell you it could be worse.  Let yourselves grieve.  It’s okay to be sad for a while about all you have lost. 

But don’t live there. 

You’ll find a new purpose and new ways to find joy out of life. Sometimes the good days will be few and far between, but I promise they will come. Cling to hope and those that support you. 

And remember, your GP family is always there for you, waiting with open arms. 

Written by Kristin George for #YouSeeUs.
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