Inflamed and Untamed

These were your responses to the question “What has been the hardest part about living with an invisible illness (Crohn’s disease or ulcerative colitis)?” that I asked yesterday on my facebook page:

“Hardest part is I always feel as though I have to defend myself to others. People see me smile or having a good time and they think I’m fine and I’m over reacting or just faking my colitis. I find it the hardest with people at work!”

“I hate how people think that this disease is just a walk in the park. As I always say to others, “You will never fully understand until you experience it yourself.”

“When people ask me to come out or help them out with something and tell me you have to get out and they keep insisting. It’s like leave me alone, if I was feeling well I would come out and have a good time or help you move or whatever. I don’t enjoy staying home sick I have no choice so respect my wishes.”

“When you’re going through the process of being diagnosed you’re constantly having to go through tests that in the end it still takes so long to find out whats wrong with you and have someone treat you properly. You watch everyone else eat dairy or veggies….milk….and i love milk….and they are fine but I eat any of that or drink milk and I automatically get really sick and tired and its like i have to take a nap to feel better. i can never finish a meal, red meat hurts my stomach….sometimes i just joke saying i should just skip out on the meals and just drink ensure or something.” 

“It’s tiring on a good day! Just goes to show how a common cold gets everyone else, yet we are still able to get on with life even though you feel as though you’re on deaths door!”

“Being told: Why are you so tired all the time? You look fine. Are you not in a good mood today?” 

“How can you possibly be tired, you havent done anything today.”  At least if you have a broken leg people see the cast…no one see’s a broken intestinal system and what it does to you.”

“My workplace is very supportive. However, it’s hard knowing that you’re going to run out of energy before you’ve achieved all you want in a day.”

“I hate the comments, “You look fine”, “Wow, you can eat whatever you want and still lose weight!”

“Because UC is so varying I find it hard to explain to people that I can be fine one day and knocked out the next, and trying to explain away the exhaustion is exhausting!” 

“I look normal on the outside because all I want is to make myself feel just like everyone else. So I do my hair, put on my make-up, select a nice outfit. I smile and laugh at appropriate times and hold conversations when I feel like I could fall over. I do this because the alternative is to let everyone know just how I feel and that would make me seem like a constant complainer and who wants to be around that? So people see a put-together person who seems fine, but on the inside I am bleeding. I am missing a large part of my digestive system. I have portions of my intestine that are narrow and cause pain and make it difficult for food to move through because of scar tissue. I am on strong medications that come with their own battles. My body is at war with itself. I suffer mentally from anxiety, embarrassment, constant worry…it’s all exhausting. That is what people don’t see. That is the hardest part. I am fighting and no one is there to say “way to go!” because on the outside I seem fine.”