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A diagnosis but no treatment: A journey to advocating for myself

Christina, age 27, California

In 2017, I received my POTS diagnosis. This is where, for the longest time, my POTS journey began. I was told what was going on with my body. I was told that it was a lifelong condition. I was sent on my way to live my life. No explanation. No treatment.

At the beginning of 2023, I went from a relatively normal life to bedridden. I had numbness, tingling, pins and needles, dizziness, shaking, brain fog, and fatigue that left me in bed all day. I had no idea what was wrong and what had caused this. I didn't have medical insurance and didn't have a clear path forward. After a hospital visit, I finally took matters into my own hands.

I knew I had all these conditions: POTS, small fiber neuropathy, hypothyroidism, gastroparesis, etc. However, I didn't know what any of it meant. What were the symptoms? Treatments? All I knew was to take my thyroid medication, drink water, fix my anxiety, and all would be good. I had been doing that for years, didn't have many issues, and was all right.

Oh gosh! I was truly misled.

After doing my own research, I came across Standing Up to POTS, their POTScast, informative TikToks of others with POTS, and tons of research articles discussing the connection between POTS and many other conditions I had been diagnosed with. Many things I thought were "normal" are symptoms of POTS, like air hunger and lightheadedness.

Thanks to my research and finally getting insurance, I can go to my doctors and advocate for a treatment plan. I am still on my journey, but know I am not alone. I know there are others out there, and all of them are willing to share any tips that can help me along the way.

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