You think you are normal. Until you realize you are not.
I always thought getting winded, being covered in bruises, being in constant pain of some sort, not sweating, and being tired all day, every day was normal. I had no reason to believe it wasn’t. Or rather, no one believed me enough to help me find answers.
I’ve listed my symptoms off to countless doctors over the years, just hoping that a light bulb would go off in someone’s head and they would become as determined as they are on those hospital shows to find answers for me.
I’ve even daydreamed about someone naming a new syndrome, disorder or disease after me. Or after themselves. I didn’t even care who got credit. I just wanted someone to take action.
We rely on our doctors, nurses, specialists to lead us to answers. But so many of us with chronic illnesses have quite literally been told that we’ve been given up on. That there are no reasonable answers to the problems we are facing.
So we dance in and out of seasons of fighting for answers and giving up.
Again and again.
For me hope came in the form of relate-ability. It took me being open and vulnerable about my pain and symptoms. It took two young women who have faced similar struggles who were brave enough to approach me and help guide me to the right answers.
It took me begging in tears for an MRI. Being bounced around back and forth between my Neurologist and my PCP before my neurologist finally agreed to order one. It took me educating myself so that when I saw those MRI images I knew exactly what I was looking for.
For me this heart stopping image fell into my hands about a week before we left for India for 2 weeks to pick up our now two-and-a-half year old son.
A reason for my pain. A reason for these daily debilitating headaches. A reason to hope for a life with less pain.
After this a domino effect occurred; geneticist, allergist, cardiologists, neurologists, neurosurgeons, experts, specialists, and more appointments than I could have dreamed. It was overwhelming and still is. All while raising a small child with his own set of unique needs who does not yet speak English.
Four diagnoses thus far and one in the works: Arnold-Chiari Malformation, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, SI Joint Dysfunction and a Mast Cell Activation Disorder diagnosis on the way.
So now I’m finding a new normal. I pushed my body past its limits every day for years. Because I felt invalidated in my chronic fatigue and pain. I felt guilty for saying no to meetings, parties and events. Even though my body clearly was shouting no. In so many ways.
I’ve learned how to advocate for myself. When I’m met with no’s and when others are demanding yes’s.
So if you find yourself on a similar path- Don’t wait to advocate. Don’t wait to educate yourself. Don’t wait to push for the care you deserve.
Don’t feel guilty when you need to take a break from the madness and write off doctors appointments for awhile. Don’t feel guilty when you need to yell at the sky, reminding the heavens you are just one person, that this is all too much.
So many of us have gone before you, are hobbling along beside you, are lifting your arms when they get weary, and are shouting with resounding affirmation- You Are Worth It!
Worth the time, worth the effort, worth the endless appointments, worth the research, worth someone caring, worth someone going above and beyond.
Because you matter. And so does your story.
With All I’ve Got,