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7 Tips for Anyone Struggling with Chronic Illness Burnout

When your physical health f*cks with your mental health, let’s talk. ByChristina Heiser

Shutterstock / Wondermind

When my GI doc told me I had celiac disease—a genetic autoimmune disorder that has no cure—I didn’t realize how this diagnosis would radically impact how I felt about myself and my life, thanks to chronic illness burnout.

At first, I felt incredibly relieved. I’d experienced bloating, acid reflux, constipation, and abdominal discomfort throughout my teens, 20s, and early 30s. Apparently, these symptoms were all caused by my new diagnosis, according to my doctor. They said that when I (or anyone with celiac disease) eats gluten, it triggers an immune system response, damaging cells that line the small intestine. It’s also been associated with long-term issues like intestinal cancer, infertility, osteoporosis, and a higher risk of developing other autoimmune conditions, according to research on the condition. Not super fun information, but the intel was more than I’d had before.

I also learned the only “treatment” for celiac is adhering to a strict gluten-free diet—for life. It sounds like a lot, but I was all in. And eating anything but gluten didn’t seem that hard. There are entire grocery aisles dedicated to people who go gluten-free, right?

When I got home and started researching how to eat in this new way, I quickly realized that managing celiac disease was way different than going gluten-free for non-medical reasons. 

In order to eat anything, my new reality involved a long list of tasks including (but not limited to): scrutinizing labels on packaged foods for hidden sources of gluten, cooking the majority of my meals at home (takeout in my neighborhood could be risky), thoroughly researching restaurant menus and reviews before I went anywhere, interrogating waiters about food preparation, and educating everyone I hang out with about celiac disease. It quickly became my whole personality. 

I was so overwhelmed by all of that. I remember telling my partner that I felt like managing my celiac disease was a second full-time job. So it’s no surprise to me that people with celiac disease reported feeling more burdened by treating their condition than people with some other chronic illnesses, according to a survey published in the American Journal of Gastroenterology.

While I felt physically better within a few months of going gluten-free, I wasn’t prepared for the mental and emotional toll it would take. I dreaded having to read another food label. I was paralyzed by indecision when it came to choosing a recipe. I started to cancel plans because I didn’t want to ask more questions about the food. 

On the rare occasion I accidentally ate something with gluten in it, I beat myself up. I melted down anytime things didn’t go according to my plan. If I was traveling and a gluten-safe restaurant I planned to visit was unexpectedly closed, it consumed me. All I thought about was food. It was hard to focus on anything else.

Within a year of receiving my diagnosis, I reached my breaking point. I was burned out and felt totally alone. Luckily, a quick Google led me to message board threads and articles from people who said they felt just as depleted managing their chronic illnesses, celiac or not. 

I decided I wanted to break this cycle, so I made a concerted effort to relieve my celiac-related stress and heal my burnout. Turns out, I didn’t have to be exhausted and miserable forever. In the four years since receiving my diagnosis, here are the tips I’ve found to be most helpful. 

1. Seek support from a professional and others with your condition.

A lot of times, I felt like my friends and family didn’t fully understand how big of a deal celiac disease was—no matter how many times I tried to explain it to them. But when I found a professional dietitian who both lives with and specializes in treating my condition, I finally felt seen.

Obviously, it’s not the same as therapy, but working with a dietitian who deeply understood my condition went a long way toward improving my mental state. She validated my experiences, answered any questions I had about gluten-free living, and gave me advice for navigating social situations that revolved around food. 

I also started volunteering with a celiac nonprofit group to connect with people who know what this life is like. I made some friends I could email or text when I was struggling, and that was huge. The people in this group didn’t minimize my experiences or need me to explain any basic celiac 101 knowledge. They already knew what I was going through.

2. Ask friends and family for help. 

After I was diagnosed, I was afraid of being annoying or a burden to my people. I prided myself on being independent and self-sufficient, but I really needed an assist to get by. Managing a chronic condition is just harder on your own. In the end, this was the biggest step in mitigating my chronic illness burnout. 

Sometimes asking for help meant having my partner or friends advocate on my behalf at restaurants or do some initial restaurant research if we were planning a night out. My mom even bought me an air fryer and sent me gift cards for gluten-free prepared meals (less cooking = less stress). 

Outside of my IRL friends and family, I joined a bunch of online celiac groups and connected virtually. In these groups, I’d scroll through posts to find celiac-safe restaurant recommendations in my area, crowdsource budget-friendly gluten-free recipe ideas, and get tips on how to make traveling with celiac easier. These groups became a safe haven whenever I needed help—I couldn’t believe how much info I could get for free!  

3. Find ways to ground yourself.

I was so focused on avoiding gluten at the beginning of my diagnosis that I completely neglected activities that made me feel mentally good. Spending so much time researching and cooking almost everything I ate (on top of working a full-time job eight hours a day) put my mental health on the back burner. 

When I hit my burnout point, I knew I needed to add meditation, yoga, and journaling back into my routine. So I found free guided meditations and yoga classes online and an anxiety journal from Amazon. 

For me, getting grounded was most helpful at the end of the day, when I basically had nothing left to give. Meditation and yoga forced me to focus on my breath and body in that present moment, rather than spiraling about my health. I’ve even started using a couple of chronic illness affirmations during those mindfulness activities, like “My body is capable of healing,” and, “I’m learning what my body needs and how to take care of it. When I’m done, I immediately feel less tense and often sleep better that night. Always a good thing, especially for burnout. 

When it comes to journaling, I don’t spend a ton of time on it, but I’ve found that jotting down whatever is going through my head helps me to process my emotions and gives me an opportunity to write about the things I’m grateful for. 

4. Try to build some movement into your routine. 

I stopped exercising when I got my celiac diagnosis and barely left my apartment. This was in the early days of the Covid pandemic, so there was that. But I also felt depressed about my celiac disease and lost the motivation to exercise or even go on a mental health walk.

But movement has always been a big mood booster for me, so I knew I needed to add it back to my life. Pre-celiac diagnosis, I’d leave an indoor cycling class with endorphins, more confidence in my body, and an easier time adapting to work. Now that I was navigating a chronic illness, I needed those benefits more than ever. So I started by blocking off time on my calendar every day to take a walk or do a short burst of cardio. When I felt ready, I signed up for an online fitness app for $20 a month (cheaper than a gym membership). I started slow with 10-minute classes and walks around the block until I built up my stamina to do longer workouts. It was a process, but I felt so much better.

Exercise provided an outlet for my celiac-based frustrations, distracted me from my health concerns, improved my self-esteem (if I could crush a tough workout, I could manage this autoimmune disorder!), and chilled me out so I could sleep better.  

Setting time aside on my calendar specifically for movement kept me accountable, and once I got into a daily routine, it became easier to keep it going. Now, I usually get in three solid 30-minute workouts a week, in addition to daily walks.

5. Look for little ways to lessen the day-to-day struggle. 

Much of my stress was related to cooking ev-er-y-thing. In order to make that process easier, I started thinking about how I could cut some corners. The first step was having my groceries delivered. That way, I didn’t have to spend time in the supermarket, where I would get overwhelmed by all of the choices or reading labels in a cramped aisle. When I have to go to the store for whatever reason, I make a list of what I need and try to go during off-peak times.

The next move was sticking to simple dinners with three ingredients or less, like a gluten-free protein, vegetable, and starch. That could look like boneless chicken breast with a side of broccoli and rice, or whatever fits those criteria. Yeah, this can be boring, but it means I don’t have to deal with a new recipe that may or may not turn out to be edible. It’s all about working smarter, not harder.

I also signed up for a few gluten-free meal kits to make dinners for the week. It is not cheap, but it’s seriously helped with my recipe-decision fatigue. Hot tip: You can often find coupon codes for different meal kits online that apply to your first few orders. After your discount is up, you can always cancel your subscription and sign up for another kit with a discount. I’ve done this multiple times.  

6. Set boundaries and practice speaking up for yourself.

I really missed participating in social activities like post-work happy hours, book club meetups, and holiday potlucks, but I didn’t want to put myself in a situation where I could get “glutened” and feel sick for days. 

This, unfortunately, did happen to me early on in my diagnosis when I wasn’t comfortable advocating for myself yet. Some friends invited me to grab pizza with them at a place in our neighborhood, and I knew this spot offered gluten-free pizza. I also knew their kitchen was too small to prevent cross-contamination, so it was a risk. Still, I didn’t want to seem annoying by asking my friends if we could go someplace else or ask the waiter a bunch of questions. I went ahead and ordered the gluten-free pizza and had an upset stomach for 24 hours. 

Now, if friends want to go out to brunch, I kindly ask if I can choose the restaurant. I usually say something like, “Hey, dining out is really tricky for me because of my dietary restrictions, so would it be OK if I choose the restaurant this time? I have a couple of yummy places in mind!” 

If I ever have a gut feeling that something won’t be safe, I’m not afraid to push back or say no. I might offer something like, “I don’t feel comfortable eating at that restaurant because of my dietary restrictions, so I’d prefer to go somewhere else if possible. How about we meet at X venue instead or do X non-food-related activity?” When I phrase it like that, I find most are pretty understanding. Most people don’t want to poison their friends.

Of course, there’s always the possibility that there’s no room for flexibility. If a friend is hosting a birthday party or a wedding, I’m not going to ask them to base their food choices around me. In those cases, I’ll eat beforehand, order a drink, and keep a few emergency snacks in my bag. That way, I can have fun without being tempted to take risks and eat food that might get me sick.

Having these boundaries in place has been key, but it’s not always easy! I still sometimes feel awkward having conversations about food and don’t want to come across as a pest. One thing that helps make this less scary, IMO, is having the conversation over text or email before things go down. It’s a bit removed and less weird than talking to someone face-to-face. After I practiced speaking up for myself over text and email during the first year of living with celiac disease, I felt less awkward about having these conversations in person. It gets easier the more you do it! 

7. Give yourself (and others) grace. 

Boundaries are great, but I keep them flexible by reminding myself that it’s not personal if someone doesn’t remember that I have celiac disease or if they don’t know the ins and outs of the gluten-free diet. It’s not like I know everything about other chronic conditions, after all. That’s why I cut people slack if they miss the mark.

I’ve also tried to be more compassionate with myself, making sure I’m not engaging in negative self-talk if I accidentally eat gluten, mess up a recipe, or have a stilted conversation with a waiter. Beating myself up doesn’t help anyone, and it only leads to burnout.

Four years in, I know that there are ups and downs in this journey, and I deserve grace. Seriously, it’s a lot to manage celiac disease (or any other chronic illness)! I tell myself often that I’m doing the best I can—and I’m proud of how far I’ve come. If you're navigating a chronic condition, I’m proud of you too.