I was talking about Crohn’s with the hubby the other day. I casually said, “I think my life would be very different if I hadn’t been diagnosed with Crohn’s.” My husband replied, “You’re very different than you used to be.” I know that statement is factual, but it deflated me. I had so many goals. I’ve only achieved one of them. I just don’t think that my very practical and attainable dreams were too much to ask. I’m just not that person anymore.
When I was first diagnosed, I was in college the second time around. I dropped out after three semesters, but went back when I was 23. I was DETERMINED. There were days when everything hurt, but I kept going. I took care of a child by myself, went to classes full time, and worked part time. I accomplished all this while surviving on toast. I wasn’t eating, couldn’t stop using the bathroom, and was filling the bowl full of blood with every bowel movement. I was seriously Super Woman. Now, I’m Sickly Woman at best. There are many days when I wouldn’t get out of bed if I didn’t have a family. It’s like with every actual cut on my body, every inch of bowel removed, I have had a piece of the essential Me taken away. Sometimes I feel like a shell of my former self. There are times when I do hear the echoes of what I wanted, but they’re faint and hard to catch.
I hate what this disease has reduced me to. I want to go back to work, just part-time. I need something other than what I’m doing now. I NEED it!! However, it’s been almost 5 years since I’ve worked regularly. I have dwindling job skills and people skills. I dislike the idea of diagnosing everyone’s mental state, but social situations are very hard for me to handle now. That comes along with being in the house most days alone with the dog. I could almost wear the title of shut-in if it weren’t for the times I force myself to get out.
The doctors tell their patients about physical limitations when newly diagnosed with a disease, but they rarely discuss social limitations. It’s hard to go places with Crohn’s Disease. So much of our society is centered on eating! I can’t eat like everyone else; if I do, I’m in severe pain, have explosive diarrhea or just become overly miserable. Interaction is so important in our lives, but that skill is lost when not practiced, just like any other skill. I’ve turned down so many invitations out of fear. Fear of being sick, judged, or belittled – because yes, the small-minded and black-hearted do make fun of what they don’t understand or care about. It’s hard to live like this.
I would joke about becoming the lonely cat lady, but the sad thing is, it’s not too far off for me. I can see how it can sneak up on a person. Loneliness is not anything to laugh about. Loneliness is in itself a disease of the spirit.
I’m not sure I’ll ever find myself again. I’ll be happy if I can find a way to patch the holes.