When Your Chronic Illness Affects Your Date

It was Sunday morning. On Monday, I’d start my most restrictive, experimental diet yet in an attempt to heal my insides.

On my last day of freedom, we made reservations at the Brazilian steak house, Fogo de Chão. We had been talking about it for months, ever since Ben found out I had never eaten there before. He really wanted to take me, and I really wanted to go.

When spending $200 on a meal, you want everything to go just right – especially when one of you doesn’t work anymore. We had 12:30 brunch reservations. Plenty of time for us to get up, shower, dress, and take a leisurely 30 minute walk to the restaurant.

We figured we’d wake up well before we absolutely needed to, with time to spare before noon — the absolute latest we could leave. But just in case, we set an alarm for 11:00 a.m.

11:00 a.m. came and went. I was just so tired.

I tried to start moving around 11:35. Not a ton of time to get ready, but I could skip the shower.

It wasn’t just that I was tired, though — I couldn’t think straight. My head felt heavy. I didn’t feel well.

I started to get dressed, but it was like I was moving in slow motion. It was far too late now. There was no way I could finish in time for us to walk to the restaurant. We could take an Uber instead, but I was looking forward to the walk. The walk was part of our perfect plan. And taking an Uber is a luxury I could no longer afford — another expense for my boyfriend to cover.

Ben was still getting ready. He hadn’t realized yet that we weren’t going to make it.

I hated breaking the news. It seemed so obvious to me. I felt terrible. I wasn’t going to suddenly pull it all together and confidently walk out the door in two minutes.

He was upset.

So was I.

I had really wanted to drink mimosas and eat steak for hours on the last day that I would be able to have either for weeks, possibly months.

He seemed so angry. Furious with frustration. I had ruined our perfect plans: Our last chance in the foreseeable future to go to the Brazilian steak house.

I figured I’d keep getting ready at my own pace, and we’d get brunch somewhere else, closer to home. It was still the last day I’d be able to eat in a restaurant for quite some time. I wasn’t feeling great, but I wanted to take advantage of it.

Ben was just so mad. At me. He was pacing as if to burn off frustrated energy, like he couldn’t stand to stay in the same room as me.

It seemed like brunch was off the table.

I was still feeling impossibly exhausted and now disheartened, so I crawled back into bed. I spent the next several hours there.

It never occurred to Ben that I might be spending all day in bed because I was upset, not just because I was sick. (I could have just as easily spent the day on the couch, watching TV with him.) I was really looking forward to our plans too. I was even optimistic that we could adjust our plans. Instead, I spent the day in bed, with my boyfriend fuming in the other room.

I eventually got up and spoke to him.

Ben had no idea that I was just as frustrated as he was to cancel our plans. I was looking forward to going to Fogo de Chão for the first time, probably even more than he was looking forward to taking me there. I didn’t want to cancel our plans. I didn’t want to feel like shit. I was just as frustrated — if not much more frustrated— than he was about it. I have to live with being ill all the time.

Had I just been clearer with Ben that I was still willing to go out, that I just needed to get ready at my own pace, that I really wanted our first trip to Fogo to be perfect, the day probably would have gone very differently and much better. He can’t read my mind, and my level of ability changes every day. He can’t accommodate me, he can’t be helpful, if he doesn’t know what kind of help I need.

In the long journey of adjusting to life with a chronic illness, the most important thing I’ve ever said, and the most important thing Ben’s learned, is: I’m frustrated too.

I’ve never been more frustrated in my life. In the times when he’s most frustrated, I’m even more frustrated. I don’t need him to be extra nice or accommodating or helpful when I’m feeling well, when things are easy. I need him to be flexible and forgiving when it’s the hardest — when we’re both impossibly frustrated about this situation in which we often feel helpless.

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