May is Celiac Disease Awareness Month. Rather than tell you about gluten and celiac disease, I’m going to share a story and talk about something not often discussed.
While I was in Paris I had a momentary breakdown. I took my family on an Uber to a gluten free shop that was actually shut down without my knowledge. Everyone was tired and hungry but everywhere we walked into was very clearly not safe for me. As we sat down to eat and I declined to eat since it was illness waiting to happen, I started to plan going on my own somewhere I knew I could eat. My family offered to join (and did) but were very clearly exhausted and wanted to go back to the hotel. It was an inconvenience. I felt like an terrible inconvenience. It got me thinking and wondering if there are others that have also felt like an inconvenience in managing their dietary needs, so I decided to write a more vulnerable blog post that most of mine generally are. If you are reading, please leave a comment. Please be kind.
Real or imagined, I think that most celiacs have felt like an inconvenience at some point. In fact, I did a poll on my Instagram and 97% if those responded said that they have felt this way before due to their dietary requirements. Let’s be real, it IS an inconvenience. We have limited restaurants we can visit to eat safely, it’s hard to eat over at people’s houses and it’s hard to want to join people for things you can’t participate in. Often times to eat we have to journey outside of the way. We sometimes have to hunt down products safe to eat. Don’t even get me started on cross contamination. It’s inconvenient for me but for the most part I don’t think about it that way because it’s just a part of my every day life. It’s something I have to and expect to deal with. The people in our life may not be used to this. It’s inconvenient.
Due to celiac disease my life has been altered in a way that is manageable but not without its challenges. Im grateful that my health and life is managed by maintaining a gluten free diet. If it was me all alone on an island there wouldn’t be a problem but navigating this diet with others is where it becomes challenging.
Before I continue I must say that I am surrounded by incredibly supportive people. For the most part the people in my life have shown interest, care and consideration in not only accepting me with this “complication” but helping me through it. They do this in a number of ways: emotional support when I struggle or get sick, contributing gluten free food when cooking so that I’m included, asking restaurants about gluten free options for me when planning something so that I’m also able to eat. I’m not saying I haven’t had to be patient with them as they too learned about celiac disease. They have also had to be patient with me. I’ve been amazed and feel so blessed by these people, first and foremost being my husband whom never complains or makes me feel like an inconvenience. A good support system in key to a celiac’s mental health.
Unless you live in a bubble, you are inevitably going to experience people who don’t support or understand your disease. Many may not even realize that they are dismissing your valid concerns or your feelings. We often get labeled as “picky eaters” or “high maintenance”, as if we picked up celiac disease on sale at Nordstrom Rack. They possibly cannot understand because they haven’t lived this journey with us, for us. You will both feel like an inconvenience and have been made to feel like an inconvenience. During these times is when I find myself at my lowest in this journey. It’s then that my stamina and internal strength to advocate for myself or ask those questions I need to ask servers seems tiresome. It’s during these times I start to feel the “f### it’s”. It’s during these times that I want to isolate. It’s during these times that my inner voice tells me “you are a burden”. It’s during these times I get sick from gluten. With gluten sickness often comes reminders of hopelessness and poor health and depression from before I got my diagnosis.
How do I pick myself up? I lean on my support system. I correct my internal voice by saying “your needs matter.” I remind myself that whatever people think of me is none of my business. I treat myself and my body with kindness. Most importantly, I remind myself that this is a journey that I’m on and that there will be fumbles, stumbles and complete knock outs on the way. I normalize that within my expectations so that my emotional health doesn’t take a turn for the worst. Then I learn from my mistakes. I also have to take accountability for my actions when necessary and practice self empathy. Maybe the caution I gave in that moment was all I could give. Perhaps the situation was outside of my reasonable control or what I am willing to try and control in my life. This life comes with a need for a certain level of radical acceptance (read the link for more information).
As I come to the end of my thoughts, I’m not really sure how to close this post. If you are reading this I hope you felt understood or related to. Perhaps you will pass this along to someone so they can better understand your experience. If nothing else, I hope you know that you are not alone! The celiac community is amazing and I don’t know where I would be without you. So I guess, on that note I will thank the celiac community for your ongoing support . I will also re-assure you that, I see you!
