© 2016-2017 Nicole Marques, Married To Crohns, All Rights Reserved

My Not So Invisible Disease

January 6, 2017

Crohn’s disease. What does that even mean? Sure, I could provide a medical definition for you, but, would that be enough? Would you understand what it means then? Would you truly understand what I go through?

 

I’ve been struggling to find a way to really be open about my disease. I could talk for days about it. When I was diagnosed. How it all happened. What I can and cannot eat. What my treatment plan is like. And some may think they understand. I assure you, you don’t. I am not trying to be insulting, but until you SEE what life is like with Crohn’s Disease, you will never understand.

 

Disclaimer: Some photos may be offensive to some readers, I apologize if they offend you. This is me. Raw. Honest. Candid. No secrets. No filters. No mixed messages. Just me.

 

Exhaustion.

 

Imagine waking up every day after eight hours of sleep and still feeling tired. That’s me every morning. Imagine being so tired you can’t keep your eyes open to tuck your children into bed. That is me. Perhaps, being so exhausted that it takes you minutes, several minutes to wake up and get out of bed in the middle of the night to the sound of your crying baby. That is me. Coffee doesn’t fix it. Energy boosting foods don’t help. How would you handle it?

 

Chronic Pain.

 

I don’t need a weather man to tell me when it’s going to rain. My fingers, wrists, ankles and knees can tell me that. I have acute arthritis. Thank you, autoimmune disease! Crohn’s Disease wasn’t enough – let’s add on arthritis! Stomach pains, constant. “Be careful what you eat! Don’t eat that wheat product! Don’t touch that dairy product or you’ll pay for it later!” The daily struggle with my brain is endless. I am hungry, so I eat. I avoid the ‘trigger foods’ and think I’m in the clear… BAM! Bloating, cramping, gas pains, diarrhea. FOOD! WHY DO YOU HATE ME?!

 

 

 

 

 

Weight Loss.

 

When you’re only five-foot-four, weight loss is easy to see. With an illness like Crohn’s Disease and a high metabolism like mine, lack of food means quick weight loss. Once upon a time I weighed a healthy 108lbs. I was sixteen. Today, in January of 2017, I weigh 80lbs. Wearing a bra hurts. The wire digs into my chest, and, since I lost two cup sizes, why even bother wearing one. Wearing a seatbelt without a jacket or sweater on, hurts. The straps again, cut into my ribs, my chest, my collar bones. Sitting in the bathtub is impossible. I must sit on a towel. I have lost so much weight that when I sit, I sit directly on my tailbone. Sitting three hours in class on a plastic chair? Forget about it. I must sit on my jacket or scarf. Shopping. Ohhhh shopping. A woman’s favourite past time. Not mine. At the age of twenty-nine, I still need to shop in stores that cater to teenagers, tweens even. How embarrassing. I am an almost thirty-year-old woman, mother of two, working professional, shopping at a store for teenagers. Why? Because they carry size double zero pants and xxs size which fit a petite, pre-pubescent frame.

 

Low Self Esteem.

 

As you can see from above, weight loss has been playing the biggest role with my Crohn’s Disease. It’s been the toughest hurdle to accept. Because of it, I have lost all my confidence. ALL. It takes reminders from my husband and children to feel an ounce of beauty. “Mommy, you’re so pretty today!” Without those reminders, I’d never feel beautiful. I no longer look in a mirror naked, unless it’s only from my neck up. I hate putting lotion on my body after a shower – I shiver when my hands run over bones that protrude out. I don’t let me husband see me undress, which one can imagine has been very rough on our love life. I thank God, every day for his patience and his unconditional love to stand by me.

 

Depression.

 

It all starts and ends with depression. Some can see it. The sadness in my eyes. Some have heard my cries. Others don’t know the darkness that haunts me, inside, never really going away even on the best of days. I can’t really pin point when it all started. When I no longer woke up looking forward to the day. However, it’s another struggle added to this chaotic world of mine. Some days I cannot get out of bed. Some days I don’t want to wake up. I wish and pray for this all to end – the madness. I carry guilt in my heart for the thoughts I have thought. For the words in anger I have said. Guilt. It weighs me down, keeps me down. Depression, it hurts my family, my friends and most importantly, my husband. I’ve hurt him one too many times with the dark thoughts inside me. Sorry will never fix it. It will never take it all back. I can only try my best to move forward and find light through the shadows.

 

It’s not always bad. I do have good days too. Days without dark thoughts. Days without pain. I am on a path to conquering these demons – exhaustion, chronic pain, weight loss, low self-esteem, depression. They may win some battles, but make no mistake. I will win this war.

 

Nicole Marques

xo

 

1/8

Thank you to Fiona Nguyen from Hazel Studio Productions for working with me on this project. I trusted no other person to let into my home and capture me at my most fragile and most intimate. Your friendship is invaluable. I can’t express enough gratitude for what you’ve done. This means the world to me.

 

Article reviewed and edited by Jesse Farias.

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