Why I Stopped Identifying With My Disease

Do you have Celiac Disease? Thyroid issues such as Graves or Hashimoto’s? IBS? Chronic hives? Some other autoimmune or “incurable” disease that is solved by virtue of having a name attached to it? That there is no cure for, but hey, you can treat it by piling on the pills, slathering on the corticosteroid creams, getting the troublesome body part removed, or simply avoiding specific foods? That despite having this supposed solution, you’re still left feeling powerless, frustrated, not like yourself, and like you have to explain your entire medical history to everyone you go for dinner with?

I used to dread meeting new people at meals.

These were always the first questions they asked: “Why can’t you eat bread? Or seaweed?” and so it became my identity. The first things people learned about me were my problems, and what was wrong with my body. What was wrong with ME. They learned how I was flawed, how my body wasn’t doing what it’s supposed to. The list would come out:
I have Celiac Disease and hyperthyroid, Graves Disease. Then the explanations of what they are, and what happens if I eat wheat. Lovely dinner conversation.

What they didn’t ask? My hobbies. My passions, my interests, where I’ve travelled, questions about my family or my hometown. Things that make me, me. But how could they, when I would always approach each event with dread and the KNOWING that it would be uncomfortable.

This is something I will say over and over again:

Our words have power.
Our thoughts have power.
The energy we hold thinking these thoughts has power.
YOU get to choose.

About five years ago, my diseases were at their worst. Constant rashes, elevated thyroid levels, my body was without a doubt out to get me. My body was attacking me. I had to rush home from dinner across town, because my eyes were itchy and started swelling. That night, my friends came to my house to help tend to my swollen eyes, and immediately called a taxi to take me to emergency. At midnight, I wound up receiving two shots at once in my arm: corticosteroids and antihistamines. The cultural and language barrier is a whole other story, about advocating for your health in the face of denial and misunderstanding. In the end, I finally had relief for this dreadful situation, and I never wanted to go through it again.

Around this time, I started noticing personal labels, and wrote down all the labels I could identify myself as. I don’t know if I can find this list, but it was something like:

  • Celiac
  • Gravester
  • Sicky
  • Vegetarian
  • Woman
  • Girlfriend
  • Daughter
  • Sister
  • Teacher
  • Foreigner
  • Runner
  • Hiker

And I noticed the feelings that came up from being associated with each of those labels. And I knew, so strongly in my core, that something had to change. I didn’t WANT to be labelled as some of those things. I wanted to be identified with the things that I LOVE about myself, instead of the things that drag me down and take me away from who I am. Can you relate?

And so my language changed.

Instead of saying “I’m a Celiac” or “I suffer from hyperthyroid” I began framing it in a simpler, more empowered way: “I can’t eat wheat” or “my thyroid is overactive, but it’s getting better.” Slowly, slowly, I took my focus OFF my problems, my dis-ease, and focused on doing things that made me feel good. So when someone would ask why I couldn’t eat wheat, I could tell them I have Celiac disease, but regular exercise and reducing stress makes my body less sensitive. This opens the conversation to GOOD topics, like “What kind of exercise do you do?” or “Life’s so hectic, how do you manage to keep your stress down?” The answers to those questions are something to write about another time, too!

Do you see how that can help? By choosing how I identified myself, my thoughts changed. The energy I walked around with, and the language I used, changed. How people perceived me changed. I chose to stop identifying with my diseases, and although they’re still around, they’re so, so much more manageable, and my TSH levels are fully present and functioning for the first time since being diagnosed with Graves’ Disease eight years ago. I’m less willing to take chances when I eat out, and prepare food at home more often. I’m also more inclined to ask if something contains wheat, flour, or soy sauce, even when doing so is awkward and challenging because my Mandarin is less than perfect. All because I got fed up with being lost in the shadows of my disease, and STOPPED IDENTIFYING WITH THEM.

Remember: Where your attention goes, your energy flows. Choose wisely.

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