I'm Still Sick When I Look Fine
Since I was diagnosed with ulcerative colitis at the age of 13, my parents have been my primary caregivers and also have witnessed the most. They have seen how my relationships with friends progressed or dissipated. They witnessed me withdrawing from everyone in my life except the two of them when things were at their worst. They have also seen me out and about with friends. They have seen how I have had to navigate school/work. They have seen a lot.
I remember crying to my mom one day about how no one understood what I was going through and her response was:
“That is because whenever anyone sees you, you always look and act fine. If you are too sick to be out or don’t feel like you can fake anything, you do not go out. You are not in their presence. They only see you during the good times or at least when you can pretend enough to make it look like all is good.”
Sharing UC struggles with close friends
Looking back, I regret not sharing more with my close friends. I regret not letting them in more. I did share a decent amount with close friends but I still never allowed them to see it. I know those of you who suffer from inflammatory bowel disease can understand why.
It is embarrassing dealing with bathroom and/or ostomy issues but it is also hard to allow yourself to be vulnerable in front of others. I remember the first time I was too sick in the hospital to empty my own ostomy appliance so my boyfriend had to do it for me. I was mortified! But then I got over it. I know I am older now and I had a very “normal” mindset for a teenager when I was that age but still.
Not allowing others to see me in pain
I only even allowed my brother to visit me in the hospital twice. And on both occasions, I was either being discharged or a day away from it. My grandparents who knew everything and I knew would never judge, care and simply want to help only came to visit me one time (per my request.) Other than that, I did not allow anyone to see me that way other than my mom and dad.
I was too vulnerable and scared and felt terrible about how I looked and my brain was all over the place and just couldn’t bear the thought of anyone seeing me in that light and still wanting to remain friends with me, let alone in a romantic relationship with me.
The reasons why others don't understand my condition
When I look back about how I handled things as a teenager and my early 20’s, I realize that a lot of my frustrations could have been avoided; not entirely but had I just been honest and more accepting of who I was and what was going on with me (easier said than done!) then I would have been surrounded by people who I didn’t feel the need to hide from.
Maybe they wouldn’t understand everything or even half of it, but at least I would have given them a chance. Instead, I would be so upset internally that no one understood when I never bothered to share. Granted, I had people who I hung out with, that were friends, who I knew would never understand. But then there were others who I definitely could have let in a lot more than I did.
Looking fine with an invisible illness
I started thinking about this again when a comment was made on our Facebook support page by a mother who said her son always looked fine when he was around others and no one seemed to understand the severity of his disease.
I am sure her son is doing what I and so many of us have done/still do, which is that we only allow people to see us when we are okay enough to be seen, for lack of better wording. If we are in bad shape, we stay home.
If we can’t get it together enough to shower, put on nice clothes, and put yourself together in the way we like to then most of us won’t show up at a party in our pajamas after not showering for four days. If we are doubled over in agony on the toilet or in bed, why would we leave the house? Or rather, how would it even be possible for us to do so?
Anyway, I wanted to bring this up because I felt this woman’s comment was so important. It brings up another challenging aspect of living with Crohn’s disease or ulcerative colitis.
How can we balance wanting people to understand and therefore needing to be around them during vulnerable times, with the real fact that most of the times we flat out just cannot do so? I know we can talk through things with others but it still doesn’t negate the fact that people have a hard time understanding if every time they see you you look and act like everything is peachy.
It is a tough one.
What type of IBD have you been diagnosed with?