Chronic Chiari, What's Wrong With You?

Stupid Things Healthy People Say

Healthy people sometimes say really stupid things to people with chronic illness. Part of me wants to shout from the mountaintops, "I'm not fine. It won't be okay. It doesn't get better."  However, if I did that then I think my sanity might be questioned and it's already suspicious now. Truthfully, people are going to think things whether or not they actually say them.  They are going to think that we are faking, that we aren't as sick as we say we are, that are symptoms aren't that bad, and that we are just whiny babies.  For me personally, I think I would rather hear them say it than to just imagine what they are really thinking.  By hearing their misconceptions about chronic illness I can hopefully get them to understand that living with chronic illness is more difficult than they think.  Just because you can't see our symptoms doesn't mean they don't exist.  They also have a hard time understanding the chronic illness is, well, chronic.  It's not like a cold or a broken bone.  Symptoms may wax and wane but the condition will exist until I pass on.  I know it sounds melodramatic but it's the reality that anyone with chronic illness lives with.  We have had to adjust our lives and our thinking to come to terms with our diagnosis.  The healthy person has not been forced to do this; therefore, they just don't think about these things as much as chronically ill persons do.

Snarky Responses I Am Thinking

To a healthy person, if you can manage to walk without assistance, hold reasonable conversations, feed yourself, drive a car, and don't have any visible ailments then you must be healthy.  They just can't comprehend that people who live with invisible daily symptoms can manage to our day to day lives. They will never truly be able to understand because they aren't forced to.  So, what's the point? Why do I care if they understand.  Well, I know that they will, hopefully, never need to understand.  I hope that all my loved ones stay healthy.  But what I do hope that they understand is why I cancel at the last minute or why I don't remember conversations that they know we had.  I need them to just roll with the punches when I need to leave a movie because I am experiencing sensory overload.  Loving someone with chronic illness means that your plans get changed at the last minute a LOT! Sometimes our condition requires that we live life a little slower than most.  For me personally, if I need to cancel at the last minute I won't feel guilty if you go and enjoy yourself without me.  As a matter of fact, send me pictures that make me feel like I'm with you in spirit.  I understand you may be irritated or disappointed that I can't go but don't get bent out of shape.  This is what chronic illness really is; it's staying home when others are out having fun.  It's learning to pace our lives so that we can enjoy the things that are most important to us.

Polite Responses I Really Say

Even though it can seem forthright or even downright rude, I never want to squash the inquisitive nature of people.  It might seem inconsiderate; I choose instead to see it as an opportunity to educate them on the difficulties of living with a chronic illness. However, I will probably never be able to stop myself from thinking those snarky, rude retorts that just pop into my mind.