Growing Deeper Roots: My Story of Invisible Illness

I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."  That was frustrating.  Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.  I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were alread...

If you have ever been in the hospital or a rehab center or suffered from chronic illness, you are probably familiar with frustration.  When you spend four months looking for answers from a dozen doctors in half a dozen different specialities but are still left empty handed, you get frustrated.  When you can't find the words to describe how you are feeling physically, mentally or emotionally and you feel completely misunderstood by your friends, family, and doctors, you get frustrated. When you wake up to your team of doctors saying that you haven't made enough progress to be discharged to rehab, you get frustrated.  You feel frustrated and angry and helpless with all of your doctors every time you get bad news.  You feel frustrated with PT and OT for not giving you more opportunities to make progress. You feel frustrated with PMR for not letting you prove to them that you are making progress.  But most of all, you feel frustrated with your weak, bro...