Ask the Advocates: Invisible Illness & Daily Life Part 2
As part of Invisible Illness Awareness Week, we asked our Inflammatoryboweldisease.net Advocates, "How does living with an invisible illness affect your daily life? What message would you like to share to explain the truth about living with an invisible illnesess?"
Marisa Lauren Troy
Living with an invisible illness affects my life every single day in so many ways. On one hand, I am grateful I can hide how I am feeling behind makeup and a smile. But on the other hand, I wish people knew how difficult it was for me to do basic things. Because I always look fine, I feel this internal pressure to BE FINE. When I fall short, my mental health takes a toll even though I rationally understand that even though I am fighting a battle no one can see on the outside, I am still FIGHTING every single day.
It definitely gives me a different perspective than those around me who may not struggle with a physical ailment. It has tested me and ultimately made me a stronger person, with an enormous sense of empathy. When my illness(es) are a very obvious hurdle to me, physically, others may not be able to see and that can be really challenging. It happens when you wait for the bus and you're stubborn to the point where you will never sit in the handicap seat even though your joints are screaming at you. Then, the day that you decide to finally take that seat on the bus, a crowd of people comes and you feel guilty.
Illness changes you. When we explain to others what it’s like to live with invisible illness, we often say that our “insides don’t match our outsides.” We share our stories in hopes that our future will include more support and give others the courage to tell someone “I’m struggling too.“ Sometimes we just need people to simply be there, not analyzing our every move, and not picking us apart because they don’t perceive our illness to be their level of “disability.” We need them just to be there supporting us. We need you to just be with us, even in silence, so we can feel.. visible.
Without a doubt, Crohn's is very hard to deal with. If you looked at me, you would never know I had Crohn's. The only way you would know is I took off my shirt and saw my huge scar that goes down the center of my chest/stomach. But even then, you could argue that I was bitten by a shark. Hey, that's a much cooler story right?
Living with an invisible disease is very hard to deal with because nobody truly understands how it affects me. It affects my work life. I teach 23 students and interact with faculty all day. I always have to excuse myself from meetings and such. I miss information, which I later have to catch up on. And I am always thinking, "What is everybody else saying about me?" Everywhere I go, I have to worry where the bathroom is. I have to check out the "bathroom scene." Is it a one stall, or communal (men's) bathroom? Is it clean? Will people hear me when using the bathroom? I often get so stressed out that I can't enjoy myself in a big crowded setting. If I had to give one message to explain the truth about living with an invisible illness, that message would be: Remember there is always somebody out there who has it worse than you. And also, 9 times out of 10, people will understand and make quick accommodations to make your feel comfortable. Just be honest.
It’s a challenge every single day living with Crohn’s because of how unpredictable this disease is. There’s no guarantee that I’ll feel the same from one day to the next, or even one hour to the next. It’s incredibly difficult to be caught in this vicious cycle of starting to feel better just to have it suddenly ripped away without any warning whatsoever. I always feel like Crohn’s is a mountain that I’ll never stop climbing. No matter how close I get to the top, or how good I start to feel, I never make it all the way there. Every time I get close to feeling better, something happens that sends me sliding back to the bottom where I have to start all over again.
Share your experiences
How has living with an invisible illness affected your daily life? What do you wish others knew? Share with us in the comments or by submitting your own story.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?