You Didn’t See Me Yesterday
On Monday night I attended the annual gala for the Greater New York Chapter of the Crohn’s & Colitis Foundation, where I’m a board member. The evening was a wonderful mix of celebrity chefs’ tasting tables, an elegant sit-down dinner, entertainment by supremely talented Broadway performers, and well-deserved awards. Everyone who attended was well-dressed and thrilled to raise money for our shared cause.
Since I’m a big schmoozer, I made the rounds talking to patients, their families and friends. And since I’m also a Crohn’s patient I freely ask how fellow sufferers are doing. One patient instantly confided that she was thrilled to be there because she was having a good day. Another told me about his struggles to get insurance to pay for a much-needed Remicade infusion. During the entertainment, a Broadway actress sidled up to me as we were watching a vibrant and healthy-looking fellow performer who has Crohn’s disease. She described his debilitating flare-up during the run of a Broadway show they were both in. “He was literally grey,” she told me. “We had to carry him around backstage so he could make his next entrance.”
In spite of all the struggles people shared with me I realized that an outsider would not have been able to sort out patients from non-patients. We were healthy looking on Monday, and only a few people had seen us the day before.
This point hit home when an eloquent teenager spoke to the crowd about how he and his older sister have been affected by their mom’s intense Crohn’s flare-ups and severe pain. As youngsters, they couldn’t understand how their mother — their life-force — was at times unable to care for them at all because of her incapacitating condition. Their mom, who looked beautiful on Monday, was putting her best face forward. No one except her family saw how she might have been on Sunday.
I understood that all too well. My wife and now-grown children are the only ones who have seen me in a very bad state. They learned through years of experience what to expect and how to deal with me: anticipate and take care of basics like food, don’t ask me to do anything, be aware that I’ll be cranky and demanding, tell me to rest when I try convince myself I’m fine even though I’m not, leave me alone and let me sleep. I didn’t realize until after we’d been married many years that my wife developed personal strategies to deal with my flare-ups. She also knows that after a miserable health weekend, where she’d had to adapt her expectations and energy level, I might wake up on Monday with tons of energy, and tell people we just had a low-key weekend. Great feeling for me; whiplash for her.
When I was a young manager in my late twenties no one at work had a clue about my condition. I made it a point to let everyone know that I swam laps on my lunch hour every day and that I rehearsed community theater productions several evenings a week. Intense business travel was a given. I was invincible. It wasn’t until a few months into that job that I had a huge flare-up, and needed to be hospitalized. I remember the call to my boss, “Oh, by the way, I forgot to tell you…”
Today social media has given young people a platform to be more open about their chronic and mental health issues, but stigmas of being labeled “other than” still exist. Both the Americans with Disabilities Act and the Equal Employment Opportunity Act provide protections at work. But how much should people share about their potential limitations without feeling like a liability to an employer?
Explaining inflammatory bowel disease to people who’ve never heard of it is tough. Even knowing how one friend deals with ulcerative colitis doesn’t mean you’ll know how another patient deals with it. Few people have exactly the same disease course or the same treatment regimen. Some patients are tethered to their bathrooms, others are immobile because of joint inflammation, others are in constant pain, others are symptom free.
When I counsel young patients I recommend they be open to employers and close friends about their underlying conditions, giving just enough basic information and not going into gruesome detail. I’ve found most employers are understanding, especially when patients share the course of a typical flare-up, and how they expect to manage being productive in spite of it. And in today’s hybrid work environment, we can always mention how the ability to work at home will make things easier for us on various days.
Sixty percent of Americans suffer from some kind of chronic illness, and many of us often hear, “Funny, you don’t look sick,” or “You look like a picture of health.” I actually don’t mind when people say that to me because I like looking good. But sometimes I have to hold back from saying, “Oh yeah, well you didn’t see me yesterday.”
