Back in October I wrote a blog proclaiming that women don't have the luxury of being sick. I stand by that premise. After my last hospitalization I'd even go a step further and say the chronically ill don't have the luxury of being sick. I don't have a disease where I look sick. When you look at me you see healthy, and that's what I want you to see. Even on my sickest days I can still pull it off like I feel well. Should I stop pretending? Is that the answer? I don't think so because I also don't want to be seen as a sick person. But is there a middle ground, some sort of modicum of understanding where people can look at me and think, "Damn she looks amazing but I know she's not 100 percent". That's what I want. Is that too much to ask?
It's been a week since I got out of the hospital. I'm feeling relatively normal. I've made it through two days without a nap, but I'm falling asleep by 9 pm. The swelling in my stomach has pretty much gone away, and my decreased food intake has led to losing ten pounds in a week (the upside of Crohn's!) But it's not a strong ten pound weight loss. I feel weak. I feel exhausted. I went back to work on Monday, four days after I was released from the hospital, because that's what I'm supposed to do. I left my house at 6:15 am to make an 8 am breakfast meeting. The two attorneys with whom I was meeting did not know about my hospital stay. The one gentlemen, who I haven't seen in a few years, hugged me and said, "You look great. You look so successful." I beamed with pride because that's how I want to look. He didn't know that my new pants that I love and last week fit like a glove were hanging off because of my rapid weight loss. I can dress my body like a champ despite weigh gain or loss. It's one of my Crohn's super powers.
|Three days out of the hospital. Visiting the zoo on a beautiful day. Like you do.|
This morning as I was rushing around to get ready for a morning meeting my husband said, "Please slow down." I looked at him and earnestly said, "You know I don't get that option". For the first time he nodded and said, "I know", and I didn't feel as alone. As much as people in the professional world want to and pretend to understand, they will only tolerate chronic illness to a certain point. I've encountered this my entire career, and I doubt it will change. To my face I get "please relax and get better" immediately followed by "but also do this, this and this". And I want to do these tasks. I've worked the entire time during every hospital stay I've had in the last three years. I've let nothing slip through the cracks. But I constantly have to overcome the perception that I'm sick.
My husband is the most amazing, understanding and supportive human in the world. I cannot even find the words to describe how incredible he is. He's constantly on me to relax, and he will take everything he can off my plate. But we have a two-year-old son who wants Mommy. We had a toddler who has been insanely needy ever since I got home from the hospital, and I don't want him to feel like I'm not around and present. Even with my husband carrying the entire load of our family on his back while I'm out, I still feel pressure. It's not pressure from him but pressure to still be healthy. I don't want to be a sick mom or sick wife.
|My husband took this photo four days after I got out of the hospital. I look exhausted.|
My bowel obstruction has made me entirely rethink my diet and caffeine drinking habits. I'm actually feeling more positive and energized than I have in a while. Dodging the surgery bullet has me feeling hopeful and like I was given a second chance. I am so grateful for my family and friends and colleagues. While recovery can be a frustrating and lonely process, I know that I have an incredible amount of support. Bear with me while I'm feeling crabby and figuring it out.