Nov 8, 2019
Behind closed doors
What Crohn's and colitis awareness mean to me
Guest post by Lyn Fraser
We are not invisible.
We smile. We go to work. We take the kids to activities. We go through the motions of daily life—but that doesn’t mean we are not in pain.
To me, raising awareness means recognizing that the tears, heartbreak, and hurt that we experience are valid and real—recognizing that our illness has caused countless challenges, and the strength we use to overcome them can’t just be swept under the rug; can’t simply be called “invisible.”
THE IMPORTANCE OF SELF-AWARENESS
As patients, we have to be our own advocates. We have to understand all aspects of our IBD—physiological and psychological—and make sure we are honest about its impact, both to others and to ourselves.
Unfortunately, nothing can be certain when you live with Crohn’s or colitis. Learning how not to let things brew, to let your mind wander, or to live in a world of “what ifs” can be a daily struggle.
One way to alleviate the anxiety is to get the most up-to-date, correct medical information and advice through resources such as your healthcare team. Arming yourself with knowledge is key, but relying on “Dr. Google” is always a bad idea!
Of course, when it comes down to it, there is absolutely nothing wrong with acknowledging that you need help. You don't have to be public about it, but you have to be open.
Often, when people offer to help, our instinct is to say “I'm okay.”
But there is nothing wrong with saying: “Actually, my dishes are piled up and I haven't done laundry in ages. Can you please help me clean up?”
Some days, “help” could mean having someone by my side; being in the presence of people who love and support you.
It is okay to say you are not okay. Every person who lives with Crohn’s or colitis has a different journey. Listen, figure out what works for you, be your own voice, and offer your support to help build your own community of those who truly “get it.”
MOVING ON AFTER A CROHN’S OR COLITIS DIAGNOSIS
Take the time to embrace the darkness. You may not feel like the person you were before, but that person is in there. For me, that person is stronger than I ever expected.
At times, it could feel like the negativity has swallowed you up—but you can escape this mental prison.
I currently take medication for my anxiety and depression—and I will probably need to take it on and off for the rest of my life, because part of living with IBD means never knowing when a bad day is coming. Others find the “reset” with alternative resources: yoga, meditation, reading, or simply grabbing coffee with a friend. No matter what works for you, you should never feel ashamed to speak about it.
Putting your mental health needs first is a game-changer for your physical health. The mind-gut connection is real, and, for me, it’s strong. I always have to think about both my psychological and physiological needs when making decisions about my care.
I used to carry so much guilt when I couldn't be somewhere I agreed to be when I wasn't feeling up to it. So often, I hear people say: “Well, you look fine?”—and that is the first stigma that needs to go. My body is constantly fighting with itself; my mind is telling me I'm a disappointment, a burden, that I'm needy; and just because I look fine on the outside doesn’t mean I’m not waging a war with myself on the inside.
On the days when these emotions take over, I am lucky enough to get a message from someone who loves me or see a picture of my family. And then I remember I am none of those things.
We all have our demons. It is not about putting on a smile and pretending. Sometimes the smile is a way to hide. Sometimes it is a way to pull yourself up and change your perspective.
What’s important now is knowing I am a warrior. I will never stop fighting and pushing to raise awareness. It took me a long time to feel comfortable being transparent with this disease, but there is no stopping me now! I am a survivor. Everyday!
My final words of advice?
Lean on those you trust.
Be aware of your needs.
Don't just treat your guts. Treat your mind as well.