Tuesday, February 21, 2017

Only the Lonely

I'm an extrovert who enjoys having people around. Sure I need alone time to recharge, but I like being social and busy. My husband and I fill our calendar with friends, travel and fun events, and we love it that way. But there is one secret about living with a chronic illness I'd like to share with you: at times I feel completely alone. It doesn't matter how many text messages I receive, visitors at the hospital, flowers, cards or notes. I feel utterly alone in a sea full of people I love and well wishers.

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.
But a few hours later when someone who knew about my hospitalization also said I looked great and then we discussed a giant list of things for me to work on this week, it felt different. I felt like I don't have the luxury of being sick. It's well established that I'll push myself way beyond my limits, but maybe, just maybe I'd like to have a little slack. 

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.
All this pressure and pushing, both personally and professionally, makes me feel lonely. It makes me feel like there's nobody in the world who gets how I'm feeling. When people ask how I'm feeling I don't want to say, "I'm f*cking exhausted and it hurts to digest food." I want to say, "I'm great" and mean it. But trying to walk that line of being honest without being whiny or negative is a hard one. 

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. 

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