Seeing the Light: Getting Through the Emotional Fall-out of an MS Flare
When you have multiple sclerosis, you know that flare-ups are inevitable. But when they strike seemingly out of the blue after a long remission, the blow can feel twice as hard.by Jackie Zimmerman Patient Advocate
It had been seven years since my last multiple sclerosis relapse, but somehow I knew that one was coming. Perhaps people with MS have a wicked sixth sense for predicting flares. Perhaps I’m just lucky. I had felt it brewing for months, so when I woke up missing the vision from my right eye, once again, I wasn’t surprised. But what a bummer of a thing to be right about.
This was not my first bout with optic neuritis or my second. This was the fourth time, so I was familiar with the logistics of relying on a single eyeball. That I could handle. It was the waves of guilt and frustration I didn’t expect.
The last time that I had an MS flare, I was in the process of having multiple surgeries for my ulcerative colitis. My energy and focus were not on MS at all. I wasn’t working because I’d been so sick from UC, and I was living alone. So when I found myself unable to see, I relied on my parents for their help with the basics like getting groceries and helping with my dogs. I had nothing else to worry about except getting better.
But when this last flare hit, everything was different: I was married and working full-time from home. This time, I had people relying on me. So, of course with work, I convinced myself that I could still do parts of my job. I sat down to write my co-workers an email about what was going on, intending to share all the ways I’d still be keeping up, only to find that the double vision I had in my “good” eye was so extreme I couldn’t even finish. My husband had to do it for me. That's when I knew. I wasn't going to be able to help at all for a while. I couldn't give them any deadlines for when I’d be back or when I’d even be start picking things up part-time, which isn’t ideal for any workplace. Although they were very supportive, I know what it’s like to be short-staffed. The guilt inside me grew.
I honestly couldn’t do anything that required sight. The double vision persisted and looking at screens of any kind caused pain in my eyes. In fact, any kind of light caused pain, so I laid on the couch, in a dark room with a mask covering my eyes. No TV. No reading. Just being. Sure, I could have listened to the radio or an audiobook, but I was sulking too much to allow even the tiniest bit of joy. I’d love to say that I just practiced mindfulness every minute for a week straight, but I didn’t. Instead I sat alone with my thoughts, which felt like a version of my own personal hell.
I thought about how much I hated MS. I thought about how I was letting my coworkers down. I thought a lot about my husband, who wasn’t in my life the last time I had a flare. How did he feel? Was this too much? Was I being too needy? It was such a nice change of pace to have some help during that week on the couch, but I felt like I could have been doing so much more than I was. I wanted to use my “down time” to clean, meal prep, and tackle that never ending to do list we all have in our homes, which was totally unrealistic.
I’m really lucky that I have a husband and care partner that understands my unreasonable desire to be productive, and he consistently reassured me that simply healing meant I was doing enough. He adapts with me when I have limitations because of MS. During this relapse, he brought food home every night because he knew I probably didn’t eat during the day, and he didn’t want to waste time cooking. He’d call instead of text because he knew I couldn’t read the screen. While these kinds of things are not groundbreaking, they showed me that I wasn’t on my own anymore.
Around day five I had convinced myself that someone, somewhere, was upset with how long it was taking me to get back on my feet. Spoiler alert: No one, anywhere, was upset with me. In fact, my colleagues, husband, friends and family were all quite reasonable about the length of time I needed to recover. But when all you can do is think, your mind will take you to some dark places. And for me, that darkness was both physical and literal, so the two together made for a particularly rough go.
Finally, after about a week, the double vision started to subside. I still had a sensitivity to light so I wore sunglasses everywhere, even in the house. But at least I could be outside in the fresh air. It took about another two weeks before I could look at my computer, phone or the TV, but it eventually happened and I eased my way back into my life. The relapse finally remitted.
Since then, I’ve spent a fair amount of time reflecting on that week of darkness. It replays in my mind like an argument you have with someone you love. I focus on the things I wished I’d done or said differently because I didn’t act and think the way I usually do. I walked away from that flare-up with a lot of “shoulds”: I should have been more kind to myself. I should have given myself the space and time to heal without guilt. I should have asked for more help. I should have found a silver lining and focused on it. I could “should” myself to death, but I know that won’t help me now or for the next flare that is bound to come.
MS often puts us in new or unexpected situations that we aren’t prepared to handle, and the last thing we need are more “shoulds” to fuel the guilt-fire. If I learned anything from this last flare, it’s that these are the times we need to treat ourselves like our own best friend. Ditch the supposed-tos and give yourself the patience, kindness, and gratitude you deserve. And if you’re struggling to be patient, kind, and grateful all at once, just pick one to focus on and eventually the other two will follow. Soon enough, you'll find yourself in the open space you need to heal.