"I know EXACTLY what you are going through"

When you have a chronic illness a lot people do not know how to respond or how to talk to you about it.  They can be confused, feel bad, or can be completely clueless.  Now some people are great, and they are the people that in someway can understand what you are going through (maybe they are going through it themselves, know someone who has, or they are just good at being there for you).  However, more often than not you find the individuals who have no idea how to address someone who is chronically ill.  Today we decided to tell you about 2 things people have said to us that aren’t the best things to say to someone who is chronically ill.  
This honestly sounds like something that we could have made up.  I mean, who would say something like this to a person?  Sadly, this has happened a lot, and always leads the intense need/desire to roll your eyes.  The statement goes along the lines of “Oh I understand what you are going through--I watch Grey’s Anatomy.”  1.) TV isn’t real life and 2.) How is this something good to say to someone?  I mean, it doesn’t make any sense.  Seeing an actor pretending to have my medical condition on a screen for a few minutes does not tell you ANYTHING about my condition.  I am a real human being who actually physically has this condition.  I can guarantee you that any medical show you see depicting my condition does not 100% accurately display my life.  Usually, those shows end with an uplifting, or happy ending.  Where the condition is managed/cured and everyone lives happily ever after.  That isn’t life with a chronic condition.  I do not get to go to one ER visit and skip away and live happily ever after.  No matter how much I wish that this could be true, it just isn’t.
Another instance is when people have told us and our families was “I know exactly what you are going through.”  You know what, they really don’t.  They don’t know “exactly” because no two cases or diagnoses are the same.  They have not gone through the same appointments with the “exact” same outcome.  They do not live my “exact” day to day life.  The only person who knows exactly what I am going through is me.  Now, you may have an idea, but that is something very different than knowing my life 100%.  When an individual told Tremor’s mother that they knew “exactly what she was going through” she couldn’t take it anymore.  I mean, no one is living her life but her.  Something as simple as how you word your statement can make a huge difference.  I don’t know, maybe say that you can see how it would be difficult to do _______ , or maybe just listen to them instead of inserting yourself into their shoes.  
To those of you without a chronic illness, please think through what you say to someone who is chronically ill.  To those who are chronically ill, we are here for you.  While we may not fully understand or be able to comprehend 100% of what you are going through, we still are here for you.  Life as a spoonie is difficult.  While some days are better than others, spoonie life is kind of a pain.  The two of us don’t fully understand 100% what the other is going through all the time, but we are still there for one another.  We understand bits and pieces of one another’s life--for example frequent hospital visits, or certain medication side effects.  We know that no matter how many medical shows we watch, we don’t know how how that feels in real life.  We also know that even though we watched it on TV, we cannot perform an intensive surgery.  

To all of you out there with a chronic illness, we support you and

WE BELIEVE IN YOU!

-Nemo, Tremors and Secret Agent Puppy

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