Autoimmune Stories:

Anna's Story: Holding On To Hope with an Undiagnosed Illness

Anna April 8, 2022

For many people, living with a chronic illness is like fighting multiple battles at once. Grief, frustration, and exhaustion are just a few ways to describe what it feels like to deal with debilitating health issues. Although the process of learning to cope with illness is complex and deeply personal, many chronic illness fighters struggle to find the support they need -especially within medical systems that are often dismissive of the chronically ill.  

In her story, Anna opens up about her life with a painful, undiagnosed digestive disease. Her experiences range from feeling the agonizing loss of everything that chronic illness has taken from her to her endless determination to find answers about her health. Anna’s story reminds us that everyone’s experience is valid and that hope is always worth holding on to. 

Anna's Story

Hello, I’m Anna!

For two years I have had terrible stomach pain. 

Before my illness, I used to be a visionary, artist, super creepy, and sexy woman: somebody you would never forget! I still have a goal of one day becoming a famous artist. 

My illness started as a standard stomach ache. I went to see a doctor, where I received my first gastroscopy. They diagnosed me with mild reflux and esophagitis, then they sent me home with one medication. But my stomach pains continued to get worse.

https://ciri.portfoliobox.net/art

I thought I would be able to cure my stomach issues with diet and medicine- however, my symptoms grew worse. Now, I experience constant pain after every meal, after every sip of water, and even on an empty stomach. A lot of times, the pain is so severe that all I can do is lay in bed, massage my belly, and cry. I’ve spent a lot of money on over-the-counter treatments and products that are supposed to help with stomach pain and digestion, but nothing has worked. 

After my second gastroscopy, I was told that I had no reflux at all and that my stomach looked healthy, so I went in for a colonoscopy. That was normal, too. I’ve also had CTs, blood tests, allergy tests, and ultrasounds.

The test results offered no explanation for my pain.

I saw a second gastroenterologist who was very rude and said to my face: “Your stomach is ok. I don’t know what to do with you so go home.” Now I have a third gastroenterologist who is very nice. He did another gastroscopy and a gallbladder gastroscopy, but he couldn’t find the cause of my illness. Doctors also measured the PH of my stomach, but again I was diagnosed with reflux and sent home without any other help. To make matters worse, doctors have recently discovered that my body has developed a tolerance to pain medication. 

In addition to medication, I try to manage my pain with acupuncture, aromatherapy, massage, and a healthy lifestyle. A little bit of exercising helps as well, even though the pain makes it more difficult. I look forward to reading about new methods for chronic pain treatment here in the Czech Republic because it gives me hope.

https://ciri.portfoliobox.net/art

The hardest part for me is waking up to hopelessness every day, starting each new day with pain – because the pain is all day, every day. I had to give up all meetings with friends. I used to draw, go to the gym, and do programming classes. I loved mathematical problem-solving. Now everything is lost. Even my ex-boyfriend walked out of my life, which left me completely broken. My parents are there for me but my illness makes them worried and unhappy, and they feel depressed because they cannot help me. When friends send me pictures of things they’re doing, I cry because it hurts that I cannot be with them and enjoy those moments with them. Without health, everything feels impossible to do. I have hit rock bottom several times, but I am proud that I survived.

If I could give any piece of advice it would be this: do not give it up. If one doctor has failed you, keep going, keep searching, and keep holding on to the small hope that a cure will come.

I hold onto the hope that one day, something or someone will come into my life and I will begin to heal. 

– Anna

All images included in this story are artwork created by the author, Anna. For more of her amazing work check out: https://ciri.portfoliobox.net/art

Global Autoimmune Institute Mini LogoThe views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.

Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!

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