I think I’ve cried more tears over doctor appointments than anything else.
I would go there full of hope after waiting for months, and I’d come out with zero answers, or worse, disbelief or snarky comments.
I felt so discouraged and alone. Only a while later, I realized that doctors were not what I thought they were.
Although they are trained to diagnose, treat, and manage diseases, they generally do better with managing acute injuries.
The medical system is not properly set up for conditions like dysautonomia. The condition affects too many body parts, which leads to you playing the communicator between the various specialist departments.
The 15 minutes you get are also not enough to discuss the dozens of symptoms. And even if there was more time, the only treatments they seem to have are medications like beta blockers, etc.
These are wonderful in the short term, but sooner or later the symptoms still show through, and it’s like playing whack-a-mole with each new symptom that appears.
Understanding that helped me realize that the power is mostly in my hands. Of course, doctors need to be consulted. But I had the power to learn more about my body and to tailor my own rehabilitation plan for myself.
Where did I want to go, and how could I get there? What dietary adjustments could I make? What could I do regarding my hydration needs, movement, pacing, retraining my nervous system, etc.?
Although I felt angry and forgotten by the system, over time, that turned into empowerment. I wasn’t scared any longer because I learned to trust my own body and how to give it what it needed.
I think sometimes we turn to others expecting them to have all the answers, but the truth is that they’re human as well, and they don’t.
Of course, this can get overwhelming at times. For example, “how much of this and how little of that?” But through experimentation and through perseverance, you’ll get there.
If you’re looking for help, accountability, and support with crafting your path forward, check out my free 3-Day video masterclass: "What your doctor is not telling you about POTS"
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