"But You Don't Look Sick"

Patient Expert

Have you ever heard the often dreaded remark,"But you don't LOOK sick"? Knowing how to respond can be tough. But if you are feeling anything less than your personal best, the saying just might unleash your hidden dragon. Watch out - that angry dragon is difficult to harness once let loose.

It only takes spending a little time in the world of invisible illness to develop a sensitivity to the perceptions of others. So many misunderstandings abound in our world. At times, living with a chronic disease, especially one that commonly has few outward signs, creates a cognitive dissonance between how you feel inside and what you want others to see.

What are visible signs of dysfunction?

A cane or wheelchair becomes an outward symbol that you may have difficulty walking. People who see you using a mobility device may or may not realize that you need extra considerations and offer to be helpful when you encounter difficulties. Try not to hold it against them.

A cast worn on a broken limb is an easily accepted outward indication that you have suffered an injury. Others may not know how you broke your bone, but they probably realize that you are not functioning at 100% level. It may be more likely that someone would offer to do things for you because they understand that you are healing.

In either example above, it is not apparent that the person who uses a wheelchair or cast is 'sick.' Very likely the person would not claim to be sickly at all.

What does 'sick' look like?

When someone suffers with a cold, infection, or allergies, it becomes much easier to 'see' the sickness. Accompanying each of these conditions is inflammation, the kind that often causes redness that is visible to the observer. If we see someone with signs of infection, the outward signs make it easier to avoid that person to reduce the risk of picking up the offending virus or bacteria. Very helpful, in fact, because who 'wants' to be sick?

Diseases such as multiple sclerosis also involve inflammation, but not the kind that is visible to the naked eye. Our inflammation is internal, occurring in and around the central nervous system, about as far inside the body as you can get. This type of inflammation can only be detected by special tests.

Do you want to look sick?

Now that's a tough question. I don't believe that any of us really want to look sick. But we do appreciate empathy for the unseen. It's difficult to feel understood when others can't fully appreciate how complex the effects of our disease are.

Even when you possess the make-up, hair, and clothes of a talk show host and a smile that brightens a room, it's hard not to feel sick if you don't feel good or have significant physical or cognitive dysfunction.

What do they really mean?

I suspect that when someone says, 'But you don't look sick!", they really mean to express an acknowledgement that you are facing and overcoming an unknown challenge with an enormous amount of grace and strength.

Or, perhaps, they simply want you to know that you look great!!! Your physical, emotional, and spiritual strengths are shining through the many challenges and disappointments of living with MS.

At risk of annoying some readers, let me suggest that the next time someone says, 'But you don't look sick!", please respond with an enthusiastic, "Thank you!!" and smile with the knowledge that you are stronger than MS.

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Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.