self-advocacy
Jess: So far on this journey of movement reclamation I’ve learned that there isn’t a single part of me that doesn’t need a little bit of this reclaiming. In finding pathways to freely move and exist in my most authentic way I am having to advocate for myself a lot. The work is not just in finding your spaces- but recognizing your worth and value outside of these spaces and demanding you are seen and respected. One such place, which will be no surprise to anyone that reads this blog, is your doctors office. I am still working on advocating for myself here. It takes work to let a professional know- “hey something feels off” .. and to keep doing so even when repeatedly met with dismissiveness. Admittedly I seek reassurance from people closest to me before I take my needs anywhere else – I find ways to build my confidence before I have to go and advocate. It’s a practice of self-care in a way!
Through my work at the haus I am always meeting haustlers that have found a way to advocate for their physical and mental well-being. It is a true tribute to how both community and movement keep us healthy. And one such story came from haustler Julie Young! I remember tteaching class one weekend when Julie told me that she believed the classes she had started taking at the haus could have played a role in improving her bone density numbers and that got us to talking..
Jess: For those of us that don’t know what Celiac Disease is, can you fill us in?
Julie: Celiac Disease is an autoimmune disease triggered by eating gluten and it can cause damage to the small intestine. There are a lot of potential side effects to that damage, including nutrient deficiencies, developing other autoimmune diseases, etc
Jess: When did you first learn you had Celiac?
Julie: I was diagnosed back in January 2021. There are a lot of possible associated symptoms and side effects and in my case, I have some bone density loss, aka osteopenia. Since it’s not as severe as osteoporosis, my doctors recommended treating with daily calcium supplements, as well as increased weight-bearing exercises.
Jess: And that doctor recommendation is one of the reasons you started coming to group fitness classes?
Julie: Before coming to wear|haus, I was mostly an at-home mover. I had one brief stint doing boxing lessons when I lived in Ohio, which I enjoyed, but I never felt fully comfortable there. I made the jump to try in-person classes again after my doctor suggested increasing my exercise to improve my bone density. And once I started coming to wear|haus, I never stopped!
Jess: I am so grateful you haven’t!! Have these fitness classes helped?
Julie: Before coming to the haus, I had an initial bone density scan to determine where I was at, which is when my osteopenia was diagnosed. I had another scan in February of this year, which I think was about 5 months after I started attending classes. While I still have osteopenia, my numbers have improved! It was a huge relief to feel like as much as CD has been out of my control, I was able to make a change and positively impact my health.
Jess: What an amazing tribute to the stand you took for yourself and your health. You are truly showing up for yourself. How was it that you first noticed a change to your heath and how did you go about seeking hep?
Julie: There are over 250 known symptoms of Celiac Disease, so for a while I just thought I was lactose intolerant and had a sensitive stomach. Back in the fall of 2020, I was getting a routine physical and my doctor found that my B12 was incredibly low, so he ordered more bloodwork to see if it could be pernicious anemia or CD. At that point we ruled out anemia, so I had an upper endoscopy and biopsy of my small intestine to confirm it was Celiac. The only treatment at this time is to cut out all gluten, so I’m entirely gluten free (including things you may not think about like lipstick)!
While I was very lucky that my process only took a few months to reach a diagnosis (many with CD could take years to find answers) I ran into issues shortly after.
The hospital-referred dietitian didn’t understand the nuances of CD, so I had to seek out my own Celiac-specialist registered dietitian to help me understand what I could/should/need to eat. My diagnosing GI abruptly moved states and I had to find a new doctor who understood Celiac and could further guide me. I also fought two GPs on getting a bone density scan (they said I was too young to have bone density issues, despite the correlation with CD), until I found my new GI doctor who completely understood and ordered the test for me.
Jess: That is a whole lot of self-advocacy. How did you stick with it?
Julie: Community is everything! I felt very lucky that when I was diagnosed with Celiac Disease, my sister’s childhood friend reached out to offer support. She had been living with Celiac for about 10 years at that point and had so much advice that she shared freely with me. Conversations with her really helped me work through the initial shock and grief of my diagnosis. She also became a good barometer as I navigated post-diagnosis medical care (Do you get your bone density checked? What blood tests do you run at your physical? How often do you see your GI?).
The other biggest helper is really just time. You get more used to advocating for yourself when you’re constantly practicing. You also start to forget what all the yummy gluten-filled things taste like or you find substitutes that taste just as good, so you don’t miss the “real thing” as much.
Jess: I think that the advice and experience you have provided goes beyond just someone with CD. What advice would you like to share to any woman who has anything going on that is affecting their health physically or mentally?
Julie: Number one, trust your intuition. If something feels off, do you research, talk to others experiencing the same thing, and gather all the evidence you can.
After that, do what you need to do to get help and don’t feel bad if you become a nuisance. Keep calling, sending messages, asking questions, and speaking up. Ask for help when and where you can, whether that’s recommendations from trusted doctors or having someone accompany you to appointments to witness or support you if you hit roadblocks.