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. I read your story and thought of my two close friends who suffer Celiacs. They have in common a very high level of anxiety, they both are female,and they both developed th condition as adults. Both have benefited greatly from following strict gluten free diets, and one has overcome many symptoms of rheumatoid arthritis in addition to those of the Celiac condition.

    As a male who suffered similar, but less severe gastric problems during a period of jobl loss, high anxiety/stress, I was diagnosed with IBS/D, and my physician gave me the best advice which I’d like to ask you if you’ve considered. He said to me that because you suffer from high anxiety, your gut is churning more than necessary to process your normal dietary intake. He suggested that I add the water soluble dietary fiber to my diet. I bought the grocery store variety and found I needed only 1/3 the recommended intake.

    It worked! If you’ve already tried it, sorry for wasting your time to read this. Sending you best wishes to feel better.

    1. I did the autoimmune paleo diet for 6 months just to be sure, but I was still sick :/ I still avoid gluten and dairy though. I will try that dietary fiber though! Thank you so much for your advice! It means a lot to me!

  2. Your story was so compelling you had me hooked. I’ve dealt with similar struggles. No doctor ever seems to help. Nurses really are the most helpful. I took my health in my own hands by going vegan and I really should exercise more. I have the worst joint pain though because I fear I have ms like my aunt. No one ever said life was easy, and just like any hero in any story, we need to fight with our whole soul for our happy ending!!! I have my depression moments as well, but I had a dad who gave up. He took his own life. So I know that’s never an option, because I’d never do that to my loved ones. I’ll be praying for you and just know so many are struggling with you! We can stand strong together!

    1. Thank you so much lovely!Nurses always seem to be so compassionate. And luckily i recently found a doctor that I really trust with my health. Yoga has helped me a lot! Vegan actually made me more sick, but I do eat very clean typically. It’s interesting how everyone is different. I am so sorry to hear about your dad, that is heartbreaking. You are so strong and I’ll be praying for you as well!

  3. Oooooh mmmmyyyyyy….I’m so proud of you, Dawn! You’ve made me feel so happy about how you fought your way, to happiness, again. Because if it won’t be you, who then, will do it for you, hhhmmmmm?

  4. What an amazing story! Thank you for sharing! I’ve been through something similar and you have an amazing spirit about it! You’re a great writer and I can’t wait to see what else you have to say!

  5. Definitely fight, it’ll always be worth it. I saw three different doctors in three different hospital until one said, they’d be willing to perform surgery for my Syringomyelia. Yes, it’s exhausting, draining, depressing, stressful and I can’t even begin tell you at the record high that my anxiety was at. But, I found the doctor that was willing to listen and willing to help. You will too, don’t give up and keep fighting! You’re worth it! Hugs from Florida ❤️

    1. So happy that you found such an amazing doctor to help you! It can definitely be draining, but it has gotten so much easier to process as more time goes by. Thank you so much for your kind words <3

  6. Great message and a story so many of us who have had chronic pain can relate to. I had to actually decide to pray and forgive a number of doctors who were less than helpful. The nurse’s advice was absolutely the key. Keep fighting stubbornly to find answers and enjoy life the best you can while the sources remain a mystery. Food digestion and allergies, Hormones, un-diagnosed thyroid and many other things may come into play, But we are all different and no one fix fits us all. “Don’t give up and keep fighting..” as you say. And don’t identify yourself with your illnesses or health issues. They are a definite burden, sometimes you do need to explain to others who see your beautiful healthy looking face that you just can’t do some things due to pain and health issues. But LIVE and LOVE and find the magic in every day. What a great title Magic in Everyday. I still need to do that too!

  7. I have Lupus SLE. I was diagnosed at the age of 21 after a year or horrible reoccurring symptoms that were literally stealing my life. I kept being dismissed by doctor after doctor. Finally, on my 5th doctor, I went into beast mode. I completely lost my crap with the poor unsuspecting doctor. I explained all that was going on, all the doctor’s I’d seen prior to him, and how all they do it treat symptoms and not look at the big picture. He listened. He took into account all of the things I’d been experiencing for so long, and how they were affecting my life. He ran some tests and I finally had a diagnosis, a specialist, and the right meds to help me get my life back. Be your own advocate always. If I hadn’t, I might not be here today (12 years later) because I was very sick and could’ve died.

    1. I am so sorry that you had to go through that, but good for you for fighting for answers! Lupus is something they are still monitoring me for, but it could be something else. Sending you lots of love!

  8. You hit it spot on with being determined. I think that is what pushes us in those dark moments. Your story is so important and can bring so much hope to people who are going through something similar. Thanks for being open about a hard subject.

  9. I was not expecting to feel as inspired by this as I did. Like I’m glad I came across this post because I’m going through something similar right now. I know something is wrong with my body but doctors can’t figure it out. I’ve been writing down my symptoms but I need to write down my doctor visits as well. Great post!

    1. Wow, thank you so much. That means so much to be beautiful. Praying that your doctors will be able to find out what is going on soon. Sending you lots of love and light

  10. I became my own health advocate 2 years ago when I almost died from food poisoning. I can totally relate to what you went through, sometimes we need to encourage ourselves and fight through whatever it is.

  11. Girl… I know the feeling completely. It’s miserable to know something is wrong but doctors not care enough to keep checking or don’t want to listen or worse, prescribe you medication just to see because they don’t know. Document everything! Especially if it’s a lifelong illness, you’ll need records of everything. If you haven’t yet, start a food journal and try the elimination diet. It may be a combination of things. If you’ve had too many antibiotics over the years, your digestion suffers big time… you could be experiencing residual side effects from that. Praying you find answers soon and peace and patience until you get them. <3

    1. Thank you girl! I did the elimination diet with a nutritionist for 6 months, but I didn’t get any better, and I was on no medication at the time. But thank you so much for your prayers! It means so much to me!

  12. You are a beautiful writer – and your body and health is lucky to have you fighting for them! Sending you strength and prayers xoxo

  13. You are a beautiful writer – and your body and health are lucky to have you fighting for them! Sending you strength and all my prayers! xoxo

  14. You have to be your own advocate in everything, especially healthcare. I used to trust every thing that came out a doctors mouth but now I do my own research before and after. Your story was very compelling. Thank you for sharing!

  15. I totally get where you are coming from, once I took out dairy and gluten from my diet I was feeling 110% better. Also if you drink coffee, switch to decaf it might help reduce the anxiety.

    1. I’m so happy that worked for you ❤️ I actually took out all caffeine, dairy, gluten, and worked with a nutritionist and my health didn’t improve. But I know that helps a lot of people:)

  16. AnAngel she is, indeed! With the twists and turns of life, situations as this one are challenging and heartbreaking. However it is evident that this has become your awakening to rise up, use the strength that is inherently inside you, and shine. Blessings on your journey my dear. Seeing good unfold everywhere in your life. ❤️ xo, Evelyn, PathofPresence 🦋

  17. Have you ever tried to overcome your symptoms with a yoga practice? The yoga sequences and the asanas are very beneficial. I think that you can try to combine a yoga with a proper diet. Maybe that can affect you much better.

    1. Hey! Thank you for the advice <3 I actually practice yoga daily and I worked with a nutritionist for 6 months on a strict dairy free, grain free diet. And it didn't help:( I still eat mostly dairy free, gluten free, and practice. Sometimes it feels like it helps, other times it won't if the flare is that bad. But I will definitely keep practicing yoga!:)

    2. Wow, that’s wonderful that you have found yoga. It is a journey that takes time but always leads you to the right direction. Slowly you will see the change. Just have a patience and don’t rush and judge yourself too hard.

      Hugs and greetings,

  18. I’m so sorry for what you went through! I know what it’s like to go years without knowing what’s wrong with your body, countless doctors, and whatnot. You truly do have to fight yourself! You are the only one who knows your body, what’s working and what’s not, and how you feel.

  19. Your stubborn, your perseverance, your POWER girl. You’re so damn strong and I admire you for it. Thanks so much sharing this.

  20. In the words of Winston S. Churchill –
    “Never give in. Never give in. Never, never, never, never – in nothing, great or small, large or petty – never give in, except to convictions of honor and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy.”

    Love, hugs, positive vibes and healing prayers for you!

  21. Make your weakness your weapon, words I live by. You’re going at this the right way. Its absolutely ok to have that breakdown, in fact you usually need to find your moment of clarity. Keep at it I hope you find some answers soon.

  22. Oh girl, I’m so sorry. I have coeliac disease and the day when I received my biopsy results was one of the happiest days of my life because that diagnosis gave me my life back. I hope you can find some answers eventually.. don’t give up.

  23. Hey girly! I’ve never related to a post so much about needing to be your own health advocate. I have Celiac Disease and had seen so many doctors and had so many tests done before finding out what was going on. I began to feel a little insane having all these doctors tell me nothing was wrong. Keep your head up! You will figure it out.

  24. We have performed some very complex surgeries, have pushed ourselves every single day and have tried to always live up to our endeavour of touching as many lives as possible. For us at SPARSH, every day is a new day which comes with different opportunities, new challenges and the opportunity to reach out to more people.

  25. 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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