"But You Don't LOOK Sick!"

I cannot tell you how many times I have heard this phrase, especially in the past year.  People learn that I have Crohn's Disease and they are surprised at how well I cope and how they had never realized I was dealing with health issues.  I "look" healthy.  I "look" normal.  But...I'm not.  For the first 10 years of my illness I purposely hid my disease, so people who I had met in college didn't even realize what I dealt with on a daily basis.  I became an expert at finding "hidden" bathrooms and finding reasons to sneak away when I needed to.  I became an expert at finding excuses for why I couldn't go out when I wasn't feeling well.  That was my fault that I hid my disease, however now that I am open about dealing with Crohn's, I hear this phrase a LOT.

Anyone who has an invisible illness like mine can tell you that they have heard this phrase over and over again.  "You don't LOOK sick!"  People who say this typically mean well, and this is nothing against those people; they are just surprised and not sure what to say.  Yet, this is one of the worst things you can say in response to someone with an invisible illness and here is why:

1. It makes us feel like we have to "prove" our illness.  This is the worst feeling, when you feel like you have the flu because you have gone to the bathroom repeatedly, but you are still pushing through it.  It feels like people don't believe you, and that makes us feel even worse.

2. It does not validate the symptoms we deal with on a daily basis.  When I say "chronic illness", I'm talking about 24/7, 365.  Chronic illness does not take days "off".  It does not let you get through a holiday dinner just because it's Christmas.  It does not give you a break.  Honestly some of my best days are probably days where most people would stay home from work.  I don't know when I will have to excuse myself to use the bathroom.  I can't predict if I will have a good day or a bad day.  Some days start great and then suddenly I get abdominal pain.  It's unpredictable and it's exhausting.

3. It sounds like you don't believe us.  You mean well.  We get it.  BUT it is really hard to explain how it feels to have Crohn's Disease -- or any other chronic illness for that matter -- on a daily basis.  We look fine, yes, but we are NOT fine.  Please believe us the first time.

4. Most of the time, we suffer through a bout of our illness at work, in social gatherings, etc.  Personally in the past 11 years I have missed only ONE day of work solely due to Crohn's symptoms.  One.  However, I've suffered many, many other days without complaint.  I often feel guilty if I miss work due to my issues with Crohn's Disease so more often than not I suck it up.

You may be asking, "what can I say instead?  I mean well!"  Here's a list of some phrases you can use instead:

1. "I'm sorry you haven't been feeling well." Simple and to-the-point.  We simply need understanding and empathy from the people we care about most.

2. "Please let me know what I can do to help." This is huge.  I finally opened up to my coworkers about my disease in January 2016 and now I know if I need to use the restroom urgently, I can give my co-teachers a look and say "restroom".  They have been wonderful about helping watch my class for a few minutes while I take care of business.  Having people understand what I am going through, especially at work, is a huge step and makes me feel so much better about my situation.

3. "I am here for you."  Again, simple and to-the-point.  Knowing we have an understanding ear when we've had a rough day is a big, big deal in the world of chronic illness.