But You Don't Look Sick!

Yesterday brought Invisible Illness Awareness week to a close for 2015.  Before I go further, I think it’s appropriate to explain exactly what invisible illness is—an invisible illness is any chronic condition that is not visible by the untrained eye, or in other words, the sufferer “does not look sick.”  It is estimated that 1 in 2 people are living with some type of chronic condition, and of those people 96% have an invisible illness.[1]

There are many things that have been said to those of us fighting an invisible illness that have hurt or offended us, but of the many quotes out there, one of the most common and most hurtful is “but you don’t look sick.”  As a final thought for invisible awareness week (even if it’s a day late!) I thought I’d take a minute to explain why such a seemingly harmless phrase tends to hurt so much.

There are multiple reasons why this one statement hurts, and I’m going to attempt to share why I’ve felt personally offended by this statement.  Before I go further, I know there are times when this phrase is offered innocently, with no intention on the other’s party part to hurt or offend.  I’ve come to realize that there are times that statement is made, and it is genuinely meant as a compliment.  It’s someone’s way of saying “hey, we know you are falling apart on the inside—but take heart, you still look good!”  When offered in that context, I try to take it as just that—a compliment.  However, more often than not, it’s a not so cleverly disguised insult.  You can usually tell the person is insinuating they don’t believe you are sick by the tone of their voice, or sneering look they give you.  In those cases, it’s someone’s way of saying “you don’t look sick; therefore I don’t believe you are sick; I think you are a liar or a hypochondriac.”  I’ve even had someone blog about me in this context!  They can’t “see it” so they don’t “believe it.” (And after over 20 years of being sick, I’m still trying to figure out what these people think a sick person should look like.)

The reason this comment cuts so deeply, when used a verbal weapon, is because it completely invalidates all the pain and suffering one is enduring because they are sick.  We are often grieving over abilities and dreams lost, and someone saying “but you don’t look sick” is akin to going up to someone who just lost a loved one and telling them “well, you don’t look like someone who has lost a loved one.  I don’t believe they really died.” If someone actually did that to a grieving person the majority of people would say to them “how awful! To say that only adds to their grief. Why are you so hurtful?”….and yet, that’s exactly what has happened to many of us in the context of chronic illness.  In one short little phrase, everything we go through is met with disbelief, all with five little words.   What’s worse, is it’s hard to “prove” that we are sick, and those who love us should never ask us to prove it anyway.

In recent years, I’ve come to realize one thing that bothers me about this comment is how untrue it is.  Even at my best, there were physical signs of the illness.  My skin was often red due the rash associated with my illness.  My body was swollen due the high steroids I was on as a child.  I’d get noticeably fatigued and tire faster than my peers.  And that was at my BEST.  As my disease worsened, the signs got more and more noticeable.  My hair fell out and thinned greatly.  My entire body lost fat and muscle tissue. Areas of inflammation became calcium deposits.  I could barely walk and walked with great difficulty.  My “invisible” illness became “visible.” 

The thing that shocks me when I think about this time in my life though is how so many people still could not see the signs of the illness.  They were written all over my body and yet, often if they were noticed, they were not noticed in the right context.  An adult, who was supposed to be over here helping me, laughed at the way I walked (and she was definitely old enough to know better!) I was often too weak to get out and when I could, I didn’t have enough energy to wear my make up, and I’d get endless questions about why my skin was red.  My shawl rash (around my neck) has been brought to my attention (even in my better days) throughout my life and I’ve gotten multiple lectures about how I should not be in the sun without sunscreen even though I hadn’t been in the sun at all… my skin just does that! People do notice that I “look sick,” but it doesn’t seem to register with them that what they are seeing is sickness.  Because of that, I often feel insecure about all the things previously mentioned and more.  When you already feel bad physically, you don’t need someone adding to the emotional pain by pointing out all the ways you look different than “normal.”

I’ve lived life on both sides of the coin.  At my best, I didn’t look sick, or at least there were only slight signs.  At my worst, the signs were more obvious and yet still did not reflect how bad I felt nor did the indicate how weak my body had become.  There are days I long for my illness to be more invisible again, simply because I felt better.  Yet, I know if that happens, I’ll be met with skepticism and find people once again not believing me. It’s not that I want attention or pity, I just long for understanding.  This illness is real, not something I dreamed up or imagined. One of the hardest things about my better days was that I truly did have limitations, even at my best; yet it was rare that I would find people who would truly see my limitations and help me when I needed it.  I long to be able to simply ask for help; not feel like I have to demand it or argue with someone over my limitations. Whether it’s obvious to someone else shouldn’t matter—it’s a very real illness with very real complications in my life. 

So folks, be careful when you say “but you don’t look sick” to your chronically ill friends.  If you’ve taken the time to read this, there’s a good chance you care enough to not want to hurt them.  As I said earlier, I know sometimes it’s simply meant as a compliment…but there are other ways to say it that may come across better.  For instance, say something that validates what they go through first.  Something along the lines of “I know you are going through so much and how you look may not indicate how you feel, but you look really good today.”  Or, better yet, just give the person a compliment and leave the being sick part completely out of it, something like “you look really pretty today!”…. after all, do you go up to your healthy friends and say “You look so good today!  You look healthy!” So why not just give your sick friends a compliment without tying it into their health too? 

I hope to keep blogging more.  I have so many ideas, but just very little time to get them down!  Thanks for reading!

[1]http://invisibleillnessweek.com/quick-description/

P.S. I had to add this picture because it made me laugh out loud!