You Keep Using That Word. I Do Not Think it Means What You Think it Means

youkeepusingthatwordChronic pain and illness sufferers live in a different world from those who are healthy.  As with anything in life, you really don’t know what you have until it is gone.  In the case of lost health, the change is shocking.  There is a lot of gnashing of teeth, screaming, and crying as life as it once was slips away.  We struggle with denial and acceptance within ourselves.  Unfortunately, we also face similar struggles socially, and the hardest part is that people who present them don’t even realize it.  It is often the most common phrases that strike right at our cores.  Here are some of the phrases that don’t mean the same to chronic illness and pain sufferers as they do to others.

I want my health! I want! I want! I want! Gimme!!!

I want my health! I want! I want! I want! Gimme!!!

“How are you?” In general it is just the way we greet each other.  It means “Hello,” “What has been going on?” and sometimes it really does mean “how are you?”  To someone who struggles with their health it is a reminder of how their health has deteriorated.  How their life has changed. It is a question that most don’t feel they should answer honestly.  It often feels rhetorical, or even a poke at the real situation.  It is a reminder that you are no longer part of the normal world and this question and greeting no longer apply.

Life took a major turn.

This isn’t Albuquerque.

“You look great.”  For anyone else this would be a compliment, but for someone suffering from an invisible illness this feels like an invalidation of everything they are fighting.  It can be a painful thing to hear when you feel awful on the inside.  Those with invisible illness fight misconceptions from doctors, employers, and friends, because how they look is a far cry from how they actually feel.  For the most part we work very hard to get up and be presentable, and while this is a complement it somehow negates that it took you three hours to get out of the house because you had to stop and rest between each step.  dontlooksick“Everything will be OK.”  This is an offer of comfort in the normal world, it is meant to give hope.  Instead, this just rubs in the fact that life has changed irrevocably.  It won’t ever be OK, it will be different and grieving for what has been lost is a painful reality that accompanies chronic illness.  How would you feel if you really didn’t have any control over your life?  If your days were dictated by your body and the harder you fought it the worse things became?  Life stopped being about a career, a romance, an adventure and became about managing pain, medications, doctors and so very much paperwork.  Life narrowed completely to your illness and pain and all the problems that go along with it.  You lost your mobility, maybe your job, often your friends, sometimes even your home, OK is not even in the cards.

goodintentions“I miss you.”  This is meant to be an expression of love and longing, but it is one of the most painful things to hear.  This implies that we have control over how our lives are going.  That we could just get up and get back to the way things used to be if we just put a little effort into it.  It also implies that who we are now is somehow less than who we were.  The problem with this implication is that we already struggle with that feeling and having it reflected by someone you love is absolutely crushing.  It just adds to a long list of losses that were beyond your control and makes it even harder to want to keep fighting.

I miss me too.

I miss me too.

Communication is tricky even in perfect conditions, so it is hard to be aware of the chasm chronic illness creates between a life where your health is an after thought and one in which health dictates everything.  It helps if both sides are aware of the differences in perspective and give each other some leeway.  Also, try not to take it personally.



About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, cultural differences, Doctors, funny, health, humor, ilness, invisible illness, Medicine, mystery diagnosis, Mystery Illness, pain management, practicing medicine, Uncategorized, understanding and tagged , , , . Bookmark the permalink.

2 Responses to You Keep Using That Word. I Do Not Think it Means What You Think it Means

  1. Krys says:

    First of all, I feel mean because I’ve said all of these things to you in the distant and close past. I’m sorry and I’ll try to be more sensitive and cautious!

    Second, I think this is a great post – and I’d love to see the opposite of it. What should/can people say instead? What would you like to hear and what will uplift you?

  2. Oh my gosh, yes, yes. This is exactly how I feel.

    I’m not typically chronically ill (well, I have EDS, but I’m lucky and it doesn’t really impact me so much, apart from chronic gastric pain and odd joint pain) but I am chronically ill with a severe eating disorder, PTSD and bipolar disorder. The ”I miss you” – sometimes, ”I miss the old you” or worst of all ”I miss Gracie” kills me. Do they not think I miss her too?? Everything will be ok? I’ve gone through things that no person should have to go through, ever, and things happen everyday to make me relive them. My body is broken and my mind is never going to forget.

    Finally – thank you for explaining to me why it’s so hard to hear ”you look well” or ”you look better” – I’ve never understood it properly, but it makes complete sense.

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