On March 18th, two years ago, I drew a picture of a little cartoon ninja. She became a symbol of hope for me. She came along at just the time I needed her to. She, along with online support, helped me out of the lowest point in my life with IBD. Previous to her existence, my life felt lonely and dark. I had my husband Dave, who watched me battle every day. I had my mother who had dealt with a bad bout of Crohn’s when she was 18. But she lived three hours away and has only had a few small flareups in her life that resolved themselves on their own. I didn’t really know anyone else who was going through what I was going through.
#ChronicIllness makes you lose yourself. #IBD Click To TweetChronic illness makes you lose yourself… or who you used to be. After diagnosis, people stumble around in the darkness turning this way and that trying to grasp on to anything that they hold dear in a desperate attempt to keep a token of the life they once knew. Slowly, but surely, they begin to realize things are forever changed. Life, as they once knew it, will be different. 
Being diagnosed with an incurable disease is earth-shattering. Darkness slowly surrounds you as you are bombarded with roadblock after roadblock on your journey to find a place of peace. A place where you feel remotely normal. Remission is the most coveted goal in life after diagnosis. Most of the time, we are forced to adjust our lives. We aren’t necessarily giving up, just learning how to cope and adapt.
The sad truth is, you will probably never get to a place where you feel like your former self. Your life before diagnosis. However, it shouldn’t mean you should give up on living your life altogether. Life is never all bad. Don’t get me wrong! Living with a disease is really, really terrible. But, a wise man named Albus Dumbledore once said, “Happiness can be found even in the darkest of times if one only remembers to turn on the light.”
The day the Colitis Ninja was “born,” I discovered the vast support system that I know and love today. I found people like me who were being pummeled by a vicious, invisible disease day in and day out. A little under a month after I joined Twitter with my new “identity,” I lost my colon to the foul disease that is known as ulcerative colitis. If it had not been for my Twitter family, I am convinced that I would have completely lost it, sinking further and further into the dark abyss that is chronic illness.
My online IBD Twitter family gave me the hope and encouragement that I needed when I needed it most. If I could give anyone advice, it would be to go online, get on Twitter, type in the #IBD hashtag and you will immediately find the best friends in the world. I know that I’m not the only one with this experience either.
@ColitisNinja IRL, I don’t know anyone else with IBD. It’s gr8 to be part of a community of ppl who know exactly how it is to feel like me.
— Ian Rothman (@ianrothman) March 7, 2016
@ColitisNinja If it weren’t for online support I’d have no support at all. Gloom, despair and agony on me. — Big Bacon Morris (@Mykl0) March 6, 2016
@ColitisNinja It’s helped so much…both Twitter and HealingWell…feels amazing to offer support and ask questions. And to feel less alone.
— Sara (@colitisara) March 7, 2016
Comments from my support poll: “Well for me it’s Twitter because I keep that separate from ‘normal’ beings that are in my real world because general folk don’t understand. Some medics go much further than I would expect of them and are so dedicated that they even support patients. I don’t think this is necessary but I believe medics that listen to real patients alongside research do achieve most in understanding and treating patients. I had nobody to talk to with IBD before Twitter.”
“I have very little support. Without having found a few people on the Internet that ‘get it’, I feel so very much alone. Family & friends have very little understanding. Caring doctors & nurses are so very busy and swamped that unfortunately you don’t see them as often as you may like and many secondary issues/symptoms seem to fall wayside. ”
