The Parts of My Illness People Don't See Because I'm 'Faking It'

The funny thing about having an invisible illness is how many people think we’re “faking it.” Faking being sick, faking needing rest… even faking needing medications. The truth be told, the majority of the time we really are “faking it”…just not like people think. We are pros at faking being well, or being healthy. These illnesses have affected our daily routines, our quality of life and even our relationships with friends and family. For that reason, we tend to grasp at anything that makes us feel “normal.”

When I’m able (or required) to get out of the house, I don’t go out in sweatpants and a t-shirt (although leggings have become a staple in my wardrobe). I dress up when I can, and if it fits the occasion. Any other time, I’m adamant about looking decent and matching my clothes and shoes. I’ve even been known to match my cell phone case to the clothes I’m wearing that day (OK, so maybe that’s overdoing it some). When time (and energy) permits, I wear makeup. It makes me feel better… more confident… and I want to be (or appear to be) a “normal” person – even if only for a little while. This is what people usually see:

woman standing outside smiling

I don’t want people to see the very dark circles under my eyes caused by either pure exhaustion or from overdoing it on a “good” day. The only people who get to see the “real” me, the “sick” me, here lately, are my husband and my (step)kids… although I absolutely hate for the boys to see me that way either. I want to be a fun mom who can cook for them and play with them, but unfortunately I’m not always capable of that. Sometimes, even around the boys, the mask gets put on. I am a pro at wearing that “mask.” The “I’m healthy” mask, the “I’m happy” mask and most importantly, the “I’m fine” mask.

Normally, the “mask” is an easy, quick fix to appearing to be “normal.” I mean, really, who wants to look sick?! These past two months, however, wearing that mask has been close to impossible. My doctor started me on infusions of a biologic medication that, in addition to my weekly injection of low-dose chemo (methotrexate), have succeeded in completely laying me out. Many days have been a struggle just to get up to use the restroom without almost passing out or almost throwing up.

For some strange reason, my sister texted me on one of those days to see how I felt. I had no answer for her other than to take and send the following selfie:

woman lying outside looking sick

This is me without the “mask.” This is me sick, nauseated, dizzy, in an obscene amount of pain, and completely exhausted although I had only been awake for a little over an hour. This is the part of me I normally hide from the general public. This is exactly what I don’t want people to see… my weaknesses. It makes me feel vulnerable and, to be honest, worthless. I know better than anyone how strong of a person I really am. I shouldn’t feel the need to “prove” it to anyone by hiding my pain and fatigue. I know that. But I do it anyway… many of us do. We don’t want people to think we complain too much or we’re hypochondriacs. So what do we do? We simply fake that smile, put on that mask, and adjust that crown… we manage to make it. Some days, that just has to be good enough.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Sjögren's Syndrome

woman reaching for groceries from the top shelf

To the Woman Who Judged Me for Getting Out of My Mobility Scooter to Reach Groceries

By the nasty look you gave me, I’m assuming my ability to momentarily get out of the scooter I was using offended you. Not that it is any of your business, but I needed that scooter to be able to get around the store to purchase groceries. Stores aren’t exactly set up to be accessible [...]
couple sleeping while lying back to back in their bed at home

When I Asked My Husband Why We Stopped Having Sex as My Disease Progressed

I got married in 1990. At the time, I was in college pursuing a degree in education. I graduated in 1991 with a BA in Secondary English Education and a minor in Psychology. Afterwards, I went to work helping developmentally disabled children and adults. In 1996, I was diagnosed with the disease that would eventually [...]
A water color image of a woman sitting at a chair, with a sad, tired expression.

7 Different Forms of Fatigue I Experience Because of Sjogren’s Syndrome

Yesterday I read a post on the Sjogren’s syndrome Foundation blog entitled “13 Types of Sjogren’s Fatigue.” It was a well-written attempt to categorize and explain the fatigue associated with this disease. Now I may not be as erudite or informative as the author of that article, but I thought I’d give voice to a [...]
Headphones placed down with visual sound wave.

10 Songs for Tough Days With Chronic Illness

These are some of the many songs I use to help me cope and get through tough days with chronic illnesses: 1. “Liability” by Lorde “So they pull back, make other plans. I understand, I’m a liability. I’m a little much for everyone.” This is a song I use when I need a good cry. [...]