After starting this blog the most frequent comment was "I never knew you were so sick, you hide it so well!"
The ability to place a thick emotional and physical blockade between myself and others around me has been a defense mechanism I have utilized since I was a child. I have always been a master at looking perfect on the outside no matter what inner turmoil or pain I may be feeling inside.
This used to be a voluntary and conscious reaction to the world around me, a way to prevent vulnerability and project strength and confidence. Recently I have found this characteristic to be both a blessing and a curse. Nobody knows I'm sick....but nobody knows I'm sick.
Nobody can tell that behind closed doors in my house I never get off the couch or out of bed. Nobody knows that my hips hurt so badly at night that I can't sleep through my sleep medication which is used to subdue schizophrenics and those with other psychoses.
I bet you can't tell that I can hardly walk around my house because as soon as I walk out the door into the public eye, I bite the inside corner of my cheek so hard I have a constant sore, just so I can hide my limping gait.
Not even those closest to me know that I struggle to keep myself together on a daily basis. Just keeping a smile on my face is and arduous and sometimes seemingly impossible task. After almost every social outing or session with a client, I get into the solitude of my truck and break down in tears from choking back so much pain and hiding so much discomfort.
This disease leaves most of us with a normal physical appearance, but a completely shredded inside. I feel completely eviscerated at times, with a feeling of toxins running through my bloodstream, bacteria destroying and inflaming my nervous tissues, and shards of glass shoved into my joints.
Even through all of the internal physical and emotional pain this disease causes, I never leave the house looking disheveled. My hair is always done, my makeup is always effortless and light, and my clothes are always neatly put together and accessorized. Even down to my french tipped toe-nails and fashionable shoes, my physical appearance always reflects normalcy.
I have been asked how I always project myself so confidently and assertively, how I hide everything so well. I am called "strong" and "courageous", "powerful" and "inspiring". These are wonderful compliments, but for some reason I cannot take them to heart.
I do not put myself together because I want to. Trust me, I want to stay in pajama bottoms and baggy t-shirts all day, every day. I do this because I HAVE to in order to survive, in order to beat this debilatating and life crushing disease. If I were to allow my external appearance to match my internal state, I would lose this battle right now.
The mask we wear....is it always good to hide the ugliness that lies behind it?
Wow, this is a powerful post, Meryl. You are certainly more strong, courageous, powerful, and inspiring than me. I work from home which is a blessing and a curse. I drive my 3yo to daycare every day in pajamas or sweatpants (if I get dressed up). I never do my hair or put on makeup unless I'm going to an "event" of some sort.
ReplyDeleteI hide behind baseball hats and sunglasses, or I pull the hood of my sweatshirt up to mask the greasy hair.
I can do the dress-up and make-up routine when I need to. I recently met girlfriends for lunch and walked that walk. But I felt like an imposter and like you, I fell apart on the drive home because I was so exhausted after shopping and gossiping that I didn't know if I'd make it back to the sanctity of my home. When I woke up this morning, a dreary rainy day in the East, I was sore, and tired, and groggy, and brain foggy, and I didn't want to get out of bed.
But weekends are precious family time so I rallied and made it happen. I got dressed for Church, put on makeup, and made it through the morning. But as soon as we got home, the sweats went on, and I was relegated to the couch for movies, books, and snuggle time. Thankfully my 3yo was in the same lazy mood today so we got the heartfelt family time we needed, without the requirement for energy or a smile on my face.
If I worked from home, trust me I would be doing the same thing! I only work 8-10 hours per week, and I'm clinging onto it, although I have a feeling I will have to quite soon I've been getting so sick.
ReplyDeleteBut if I didnt work, I'm sure I'd be sitting home in sweats too. I change into them as soon as I walk through the door.
It's good to know there are others suffering the same way you are. Don't you just hate how much effort it takes to hide everythign when you're out trying to look "normal"? And then once you're alone you just break down?
Your vulnerability and transparency are quite beautiful and refreshing. Thank you for sharing.
ReplyDeleteI used to keep up alot of those appearances myself, but have found I don't even have the energy to care anymore. I still try sometimes in order to "fight back", but it depends on what kind of day I am having.
I really can relate to trying to be "normal". I tell myself that all the time, "Just be 'normal'", and then I laugh because I am not sure what that means anymore.
We often privatize our internal battles simply to prove to ourselves that we can still "be normal", despite what's going on behind the mask..we don't want people to see what we are really going through because it sets us apart from everybody else. We hide the truth because once they discover what's behind the mask, they will always know what's behind it, and not everybody, not even all of our loved ones and those closest to us actually need to know. And even once you let the mask slip and people try to relate to you based on their brief glimpse of the truth, they don't know the half of it.
ReplyDeleteYou once told me that "No one BUT YOU can ever truly know what you're going through." Sure people may be diagnosed with similar conditions, may be able to relate to certain symptoms or phenomenon, but your battle is your own and no one else's. You're not strong and inspiring because of how well you fein a "normal life", no one who knows about your afflictions would think any differently of you if your outward appearance was sloppy, because you cannot accurately gather from the outward image the status of the inward battle. You are strong and inspiring because despite struggling in a way that no one else can understand, you don't surrender yourself to the pain, you don't sit around wallowing, waiting for someone else to come rescue you, but you take it upon yourself to stay in the fight.