The Not-So-Invisible Reality of My Crohn's Disease in Photos
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: My photos may be jarring to some readers. I apologize if they offend you. This is me. Raw. Honest. Candid. No secrets. No filters. No mixed messages. Just me.
Editor’s note: Though this piece is not about disordered eating, we are aware these photos may be triggering to our audience dealing with EDs. If you or someone you know is struggling, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.
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. Imagine 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?
I don’t need a weatherman 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?
When you’re only 5-foot-4, weight loss is easy to see. With an illness like Crohn’s and a high metabolism like mine, lack of food means quick weight loss. 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 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 am 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. Ohh shopping. A favorite past time. Not mine. At the age of 29, I still need to shop in stores that cater to teenagers, tweens even. How embarrassing. I am an almost 30-year-old woman, mother of two, working professional, shopping at a store for teenagers.
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 rough on our love life. I thank God every day for his patience and his unconditional love to stand by me.
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 pinpoint 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 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.
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.