Being Your Own Health Advocate

Tears running down my face, I felt hopeless. This procedure was suppose to confirm my suspicion. It was suppose to confirm that I had Celiac Disease. With this diagnosis, all of my pain and symptoms were supposed to disappear as long as I swore off gluten (a tiny price to pay for a normal life). $1,000 later I sat on the cold office chair, as the gastroenterologist said in a flat tone, “Everything looked fine. You don’t have Celiac.”

I think he was surprised by my horrified expression. I mean, who would want to have a disease? Me, or at least a treatable disease. A disease that could easily hand me back the keys to my life. He stammered on a bit more and then made his awkward exit. The tears rolling down my face refused to stop. This was it. This was my rock bottom.

In this moment of utter darkness, my personal angel appeared. A nurse who I had never met, and will never know the name of, wrapped her arms around me and whispered, “Oh honey, I’m so sorry.” She released me from her hug and stared straight into my red watery eyes. This time as she spoke, she spoke with a sense of urgency.  “You will have to be your own advocate. No one is going to fight for your health more than you can. Get a binder and write down every symptom, every doctor’s report. You know your body better than anyone else. Don’t lose hope.”

I wish I could say that in that instant I snapped out of my depression, but that wouldn’t be the truth. I got in the car with my cousin Josh who had taken me and I had a full blown panic attack. I sobbed and sobbed and said that I didn’t want to live like this anymore. I couldn’t. Ignoring the fact that I was clearly not pleasant company to be around, Josh was there for me. He sat with me in my pain.

As the days passed, her words replayed over and over in my head. I began to feel something I didn’t think I would feel again, hope. I got a binder that week and kept strict documentation on all blood work and test results. To date I have seen 1 Gastroenterologist, 1 Primary Care Physician, 1 Nutritionist, 3 Alternative Medicine doctors, 2 Gynecologists, 1 Acupuncturist, 1 Physical Therapist, and 2 Rheumatologists.

Through my health journey, one mental attribute has risen to the forefront: Stubbornness. Now I understand that this word may have many negative connotations. In many circumstances, I agree that being stubborn is not something to be desired, but in the case of trying to navigate what the heck is going on inside of you body, stubbornness is key.

It is that drive, that determination, that helps you find the light at the end of the tunnel. I know that it would make for a better story to say that I have arrived. I am healed and there is a beautiful red bow on top of this past trauma. It is quite possible that someday that will be my truth, but today, I am here.

Today, I hold my stubbornness close and keep my eyes focused on how to get out of the tunnel. My tunnel that has transformed through years. It is no longer pitch black. This transformed tunnel has light pouring inside. It has windows. It has skylights. There are moments of progress and moments of blissful hope.

It can be easy to sit in darkness and slowly find that it is your friend. It is easy to become comfortable in our tunnels drained of color and forget that there is any other option. I quite literally needed someone to grab me by the shoulders and tell me to fight. Fight for hope. Fight for light. Fight for the beauty in life that awaited me.

This beauty that I have now found.

  1. Great work! I would like to thank you for the efforts you have made in writing this post. I hope the same best blog from you in the future forever.

  2. Im going let my husband read this great article as well. For him to inspire about getting healthy. He is smoker and even use a vape from I want to make healthy by letting him know information like this.

  3. Suffering from hormonal imbalance disorders from a decade for which there is no cure, I can relate it to your situation when your suspicion became reality. I don’t know much in depth of Celiac but gut issues are main reason for many diseases. But it is not hard to improve gut health. I hope by now you would be feeling much better.

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