Welcome to Celiac-Self Care! In this series, we’re exploring the ways in which celiac disease affects quality of life and sharing the self-care strategies that help our Reach Beyond Celiac Ambassadors cope.
In this post, ambassador Christina Heiser chats with ambassador Tori Mayernick. Learn about Tori’s five-year journey to diagnosis, how taking time off allowed her to become more in-tune with her body, and how she views cooking as self-care.
By Christina Heiser
My diagnosis journey was five years in the making. I started getting sick when I was around 20. To be honest with you, for those first four or five years, I ignored all my symptoms. They were very generic: I was tired, I wasn’t sleeping well. I didn’t really have GI symptoms.
But it reached a point where I could no longer function—I just couldn’t work. I would get home from work and sleep on the couch and not move. I had recently moved back from San Francisco to live with my family on the East Coast, and they said to me, “Something’s wrong. You need to deal with this.”
My brother has celiac disease, but even as I was meeting with doctors, I didn’t think it was an option for me. I was anemic, which can be a sign of celiac disease, so my brother convinced me to get tested. I was then diagnosed with celiac disease and felt a bit of relief.
It was validating because I’d spent the past five years ignoring my symptoms or finding ways to blame myself: You’re staying out too late or you’re working too long. It was validating to be like, “Alright, there’s actually a real reason why I can’t seem to make it through the day.”
At first, I was like, “I got this.” My brother has this disease. I know how to eat this way. But I was very wrong. It was a tough first year. I made a lot of mistakes, and I definitely found myself very lost and frustrated.
So I took off several months from work to focus on getting myself well. It took a year before I even felt a little bit better. I didn’t realize while I was going through it how difficult it was from a mental health standpoint, how taxing it was not seeing improvements right away.
I never thought about how integral food was to my social life. I remember the first week after getting diagnosed, I met up with a bunch of my coworkers to grab a bite to eat because one of them was leaving and we were having a send-off party for them.
It was my first time going to a restaurant, and it was not only a brewery, but a brewery that specialized in bread. It was so uncomfortable. I’ve never felt more awkward in a social setting.
I was just super quiet the entire time and people were confused. I’m not somebody who usually shares a lot about my medical conditions, so I didn’t want to tell everyone. It was very fresh.
I finally did say something, and they were like, “Oh, well you can just have a little bit, right?” I left that dinner feeling pretty awful; I wanted to break down in tears. This is such a simple thing, going out to dinner with friends—it shouldn’t be a big deal. But it really was a big deal.
I think the other big thing was that I needed to take time off because I couldn’t handle these situations. That was definitely tough. I kind of went into a cocoon. I was like, “I’m only going to talk to my best friends and lean on them for support.”
But I was in my mid-20s and I should’ve been having the time of my life. I had just moved back to my home city, all my friends were around. I was hurt and frustrated by wanting to move on with my life, and I couldn’t.
I think so. I’ve always been someone who ignored symptoms and just pushed through. But I think when you hit rock bottom, it’s like, okay, everything has to stop. And so one of the positives coming out of this experience is that I’m so in tune with my body.
I don’t think there’s a barrier between physical and mental health. Celiac disease can cause mental health issues, plus there’s the experience of dealing with these stressful situations like dining out.
I think from that standpoint, I’m so much more in tune with how I’m feeling physically and mentally. I wouldn’t have been able to establish that without pausing everything.
I cook almost all of my meals and instead of looking at that as a burden, I really try to look at it as a wonderful time. Sometimes I’ll listen to a podcast or music while I’m cooking, and I try to sit down and enjoy every meal.
From a social standpoint, the obvious thing is to create as many opportunities as possible to meet with people that don’t involve food. It’s been easier than I thought it would be. Going for a walk, checking out an art exhibit—there are lots of things you can do, and that makes life easier.
I’ve also gotten much better at setting boundaries and just letting things go. I’m not always going to be able to pick the right, the best, the safest restaurant option. I recognize that this might be a stressful situation and try not to be hard on myself.
It’s okay if you’re struggling. My first year of living with celiac disease, I felt like I was a total flop. I had a sibling living with this disease and it was still hard for me. I can only imagine how hard it would be for someone who was brand new to this.
My advice to people is just to try your best to create a plan and try your best to heal. Every time you hit a setback, look at it as a clue to help you figure out what works for you. Things happen. You might get glutened accidentally, and, instead of blaming yourself, view it as a learning opportunity. It’s getting you one step closer to figuring out how to live your life with this disease.
This reframing has taken a couple of years to really hit home for me—but it’s made a world of difference in just being forgiving of myself and staying positive.