Chronically effed up and invisible
Those who know me well know that I have been a walking disaster for the past 5+ years. My body throws countless dysfunction at me when I least expect it. It seethed long enough to the point where talking about it was useless, so I deteriorated in silence. I thought my constant insufferable pain was normal, and to bring it up would be over dramatic, assuming everyone was in the same amount of pain 24/7. Because after years of doctor visits, tests, and opinions, everyone always told me ~nothing was wrong~. Or they ~ couldn’t figure out why xyz hurt~ or ~how I was always numb and weak~; no one had any answers.
the response was always the same…
Whenever I would talk about my chronic headaches or chronic pain, swelling, depression, lack of cognitive function, extreme exhaustion {that was far worse than being just tired}, or inability to stand or participate in society, the response was always the same. Everyone would fire back the typical, “oh yeah, I’m so tired too. You have no idea.” Or “omg, I know, right? That is just the worst.” No one was listening. No one really cared. It made the experience that much more isolating and lonely.
Eventually, my mental and physical strength to push myself further disintegrated into a fever dream. It got to a point where I couldn’t do much of anything anymore. And if there was something I wanted to do, the vexations of planning future weeks or months around one event/activity outweighed the occasion itself. Not to mention there was no guarantee I would have the mental &/or physical capacity to enjoy myself.
It’s a miserable way to live life… but sadly, 15% of society lives with an invisible illness. It’s hard to be disabled when no one can see how much pain you are in or how hard it is just to get up and brush your teeth in the morning.
I was diagnosed with POTs, EDS, and MCAs ➝
Finally, I found a doctor who listened and cared to help improve my quality of life. I was diagnosed with POTs, EDS, and MCAs, {on top of my already existing narcolepsy and celiac disease}. Soon discovering my Vitamin D levels were so low my doctor couldn’t remember the last time a patient had a level as low as mine. Plus, the severe blood pooling causes my heart to work faster to pump blood… which results in a heart rate roughly 40 beats above regular. In addition to the blood pooling, the irregular blood flow causes a 31% {or more} decrease in blood flow to my brain.
⋆ Just ⋆ The ⋆ Beginning ⋆
After years of struggling, it is nice to have a diagnosis, but I am far from heeled. It’s near impossible to live in this world with any illness or disability, let alone an invisible one. It is incredibly isolating and lonely. The world wants you to smile and ~keep up~, but just performing necessary daily tasks is a battle. Somedays, the fight doesn’t seem worth it.
That’s why I decided to share my story because you never know who might need to hear this. After all, I started to research more into POTs after seeing an instagram post on the for you page. I don’t know where I would be today if it weren’t for that post. I wish I knew who that sweet girl was to thank her for saving my life.
If you take nothing from this,
please at least remember ALWAYS to be your own advocate regarding your health. No one knows your body like you. Nowadays, finding a doctor who cares enough to take the time and LISTEN is hard. To most, you are only just a number or a paycheck. It’s sad but true.
✺ POTs INFO⌇ hopkinsmedicine.org/health/conditions-and-diseases/pots
⋒ EDS Facebook group⌇www.facebook.com/ehlers.danlos
✺ Standing Up To POTs⌇www.standinguptopots.org
Chronically effed up and invisible
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