Over the past three years I have seen countless specialists in and out of my state and trialed close to a dozen medications for what was thought to be POTS, orthostatic hypotension, and autonomic dysfunction only to find out it may be something entirely different. I was essentially pumping my body full of medications for two years that only ever caused me to feel worse because they were treating something I didn’t have.
Like many with chronic illness, I fight from the moment I wake up until I lay my head down at night, only to repeat it the very next day. Losing my independence, my ability to work and drive, to take a walk or go to the store alone. So many nights where dinner hasn’t made it to the table because I can’t stand long enough to make it. Constantly pushing myself and fighting for normalcy.
Many of us spend hours researching case studies and medical journals, trying to become our own best advocate. Requesting specific testing to rule out certain conditions and disorders. Walking into doctors appointments completely vulnerable with tears in our eyes, simply pleading for help. We cross paths with doctors on autopilot, who because we don’t fit those cookie cutter profiles don’t know what to do with us, therefore passing us on to yet another specialist.
Positivity, strength, and hope start to fade the longer time passes with no answers or improvement. Days and nights where you are just tired. Tired of fighting, questioning if the day will ever come where this gets easier. But still somehow you keep going.
There comes a point where you can no longer hide how you’re feeling and you see the direct impact your illness has on your family. Watching my youngest cry because she wants to make me better and my oldest at 10 years old yelling at me if I overdo it or if I don’t eat. Their drawings on the fridge quickly turn into bold words of encouragement. My husband becoming the sole provider for our family and my mother carting me around to every doctors appointment, researching every possible lead, and being the voice of reason when I lose hope.
We face judgment. Judgment from strangers who see us using a disabled space, from family and friends who just don’t understand. Many of us look healthy, like we fit in. We still smile and laugh like every one else — that doesn’t change just because we became ill. So many people associate seeing a wheelchair or someone who has lost their hair to cancer as the definition of being sick. I’ll tell you one thing, I was one of those people. Quick to judge. But I quickly realized not every illness is visible and there are so many beautiful souls out there fighting and you would never know just by looking at them.
So when you hear someone has a chronic illness, I hope you realize it goes far beyond just being sick. It requires strength and perseverance, knowledge and vulnerability. It is 24/7. We are fighters and warriors, but we are also human beings who need your support and encouragement because this may very well be the biggest fight of our lives.
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Thinkstock photo by Grandfailure