*** Please consult your physician before proceeding with any lifestyle changes. If you have a history of trauma, know that you are always in choice. Nothing here is obligatory. Follow your own pacing and if you become overwhelmed, seek additional supports or contact a therapist.***
Dear Fellow Human,
When I was first diagnosed, I thought that my biggest challenge with Celiac disease would be the food I’d eat. I hadn’t really thought about all the nuances of situations that food is connected to. It wasn’t until I was at a friend’s family gathering where I was offered some pickled green beans from a secret family recipe that I realized, this is going to be a lot more complicated than food.
The questions began flooding my mind…
How do I figure out if this food is safe for me if the recipe is a secret?
How do I not eat the green beans, but also not offend Grandma?
How will I muster the internal strength to not eat something that I desperately want to?
How will I find the courage to stand alone?
It was in this moment that I realized I will have to reject so many Grandmothers dishes for the rest of my life. That was a hard thought to swallow, and I thought again to myself…
Yes, this was
more complicated
than food
While Celiac disease is one form of autoimmunity, there are many other types of autoimmune diseases. In fact, the official count of autoimmune diseases is now up to over 100 different types. (1) While no two autoimmune diseases respond the same, I thought I could share a few things I learned along the way that could have potential overlap for those of us in the autoimmunity community. I am by no means an expert and am only one person with one story. I am also aware that sometimes autoimmunity can be overwhelming in and of itself, so please take only what feels beneficial for your journey, even if that’s nothing at all.
Flareups are a reality for many of us
I wish I could have known this earlier. There was a time period where I kept thinking I had been “glutened,” (ie accidentally ingested gluten and had a reaction). I would search and search for the source of the glutening to no avail. I now know that whether I got glutened or not, that I can have symptoms flare up simply because I have an autoimmune disease. Some of these triggers for me lessened as my gut healed. Tracking and learning my symptoms and ways to manage triggers has brought me some ease and been helpful, though unfortunately this isn’t always universal or achievable for everyone or every case of autoimmunity. (2)
Inflammation and stress have physical impacts
More and more is being learned about the connection between inflammation, stress and disease. I now think of my autoimmunity kind of like the idea of filling a bucket with water. If I fill my life with too many inflammatory things, my bucket will fill to the top and overflow, which means I’ll likely experience a lot of symptoms. If I keep my inflammation lower or try to offset it, my body stays more manageable. (3)
Refine your perspective of self-care
As a three sport athlete, I was very practiced in the “no pain, no gain” mentality. But while pushing myself this way when I was younger before my autoimmunity hadn’t kicked into full gear could render positive results, it was a completely different experience if I tried to push myself as an adult with an autoimmune disease. Changing my perspective on self-care was needed. Pushing and pushing would lead my system to crash and often take weeks of recovery. Instead of pushing in the same way, I’ve had to learn gentler rhythms to take care of my body and stay within my window of tolerance. This keeps me healthier and happier.
Treat everyday with a beginners mind
With flareups being a reality, and environments being a host of possible triggers, I’ve had to get really comfortable with being uncomfortable. I’ve had to learn that everyday might be different, and that’s ok. It’s easier to me to accept this reality if I can get on board with the idea of how new and fresh each moment in life truly is. Treating each day with a beginners mind is approaching each moment as if it’s brand new, instead of forming expectations around how things “should be.” (4)
Being prepared ahead of time is game changing
It wasn’t until after repeatedly starving at events like friends weddings, when I read a book by a fellow Celiac that I realized being prepared was a game changer. Whether it’s making sure to have dietary accommodations in my purse and car at all times, or calling restaurants days ahead of time to ensure they could discreetly provide me accommodations (which can apply to both dietary and/or physical accommodations) advocating for myself made life with Celiac disease less stressful. Being prepared can also mean things like carrying an allergen card written in different languages if you’re traveling abroad. Or wearing a medical alert bracelet. (5) Or using an app for assistance, like one I use called “Find me GF.” (6) Sometimes, I will even carry things like a foam roller or anti-inflammatory lotion with me if I’m traveling, as managing chronic pain can be a part of the autoimmune journey.
become your own Advocate
If you or your loved one has an autoimmune disease, especially if it’s more on the obscure end, not every provider you meet may be equipped to care for you, and that’s okay. Becoming an advocate for your health and finding a specialist, or seeking a second opinion are ways to ensure that you get the care you need. Speaking up for what you need for your mind, body, and spirit matters. Make sure you have people on your support team who are well versed in your condition, and offer resources and/or extra screenings as they are applicable to you. (7).
Seek adequate support
Sometimes when you have a change in your health, people in your life aren’t ready to change with you. Make sure you gather people on your team who offer curiosity about your journey and provide support. This could look like friends or family who are willing to learn a new recipe, or spend time comforting you during a difficult flare up, or drive you to medical appointments. Supportive resources can also come in the form of books, online groups, in person groups, blogs, podcasts, and health coaches to name a few. Having an autoimmune disease can be a challenge. Making sure you have additional support can help to shoulder some of what you carry. (8)
adopt a growth mindset
This one for me is the hardest in continued application. I am a driven person and can get pretty impatient. So when autoimmunity throws a wrench in my plans, it takes a conscious effort for me to process my emotions and reframe my situation. I don’t always want to slow down in the way my body needs me to, but finding ways to reconcile being okay with that helps. I’ve found there are times I have to adjust my timelines and expectations. It’s hard enough to alter a timeline, but it’s even harder if you’re also fighting with yourself about it. I find that identifying ways I’m growing or learning is a way I can still feel a sense of progression, even if my body slows down. (9)
While you’ve just read about a few things I learned along the way, you’re also on a journey in which you’re the expert. If you’d like to join me, I want to extend a moment of appreciation towards your expertise as a closing practice. Living with autoimmunity can require endurance, patience, and flexibility. There are things you have learned, strengths you possess, and value in being you that is innate. Take a moment to pause, and in whatever way feels right to you, (maybe you’d like to close your eyes, or put a hand on your heart) thank yourself for your own internal wisdom.
Questions for Reflection:
What are ways that you’ve found the ability to cope with autoimmunity?
What is wisdom you’ve gleaned along the way?
What, if any, are additional ways you could add some support for yourself going forward?
In the spirit of quality of life,
Kristen
References:
- https://autoimmune.org/disease-information/
- https://www.autoimmuneinstitute.org/articles/living-well/autoimmune-disease-flare-ups/#:~:text=Flare%2Dups%20are%20markers%20of,seasonality%20%5B1%2C%202%5D.
- https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr-weils-anti-inflammatory-diet/
- https://www.forbes.com/sites/forbeshumanresourcescouncil/2021/04/21/how-to-develop-a-beginners-mindset-a-critical-trait-in-business-today/?sh=af6524265a0a
- Dowler Shepard, Jules E. (2008). The First Year: Celiac Disease and Living Gluten Free.
- https://www.findmeglutenfree.com/
- Green, Peter; Jones, Rory. (2010). Celiac Disease A Hidden Epidemic
- https://www.apa.org/topics/stress/manage-social-support#:~:text=The%20benefits%20of%20social%20support,esteem%20and%20sense%20of%20autonomy.
- https://online.hbs.edu/blog/post/growth-mindset-vs-fixed-mindset