My Invisible Fight

Invisible Illness Awareness Week always seems to catch me by surprise, and I'm not aware of it until my friend Rachel over at Cranberry Tea Time starts posting about it. 

This year, Invisible Illness Awareness Week falls through October 4th, making for a nice overlap with the start of Dysautonomia Awareness Month.

I'm also loving the theme this year: My Invisible Fight.

This Warrior Shows Off Her Steph Curry Shirt!

Here are some topics Invisible Awareness Week invites those of us with invisible illnesses to think and blog about:

• a fight that you have that no one sees.
• one person who makes you get up and fight each day to have a life
• one decision you fought to make that has been a good thing (or not so good)
• what treatment or medication did you fight for?
• one hurdle that fought to take your hope from you, but you fought to get it back!
• how you keep fighting to live when life wants to get you down
• why you fight for awareness as an illness advocate (or just some man or woman who likes to make some noise)
• one time you fought to stand up for an unjust situation
• what advice you would give someone recently diagnosed about how to choose what to fight about and what to let go of.

In my general life, I dislike just about anything that has to do with fighting, especially in my relationships. I dislike fighting. I dislike conflict. I dislike yelling. A lot.

But, the reality is that as I look back at the past 17 years as a person with an invisible chronic illness, so much of what I do every day is fight. Every day is a battle of sorts. Every day is a fight of sorts.

I fight to get the medications I need. I fight to find the doctors who will help me. I fight to be believed. I fight to put a smile on my face even when I'm deeply struggling. I fight through pain and fatigue. I fight to engage in the things I love. I fight a LOT of emotions--grief, sadness, pain, anger, anxiety. I fight to do things to make me more independent. I fight most of all, though, for LIFE.

Warriors Gear! (The Sweatshirt is Warriors Gear too!)

It wasn't until this year that I finally embraced the idea of myself as a warrior. I am a warrior because of how I fight. I fight with perseverance, resilience, courage and bravery. I fall down a lot, yet somehow I always get up. 

Once Dr. ANS said to me in one of my darkest days:

I’m struck by your comments about feeling like a failure, which is not something that you are, or should be wasting energy considering. I would just repeat that you are doing as well as I can imagine doing in this situation, and I would hope I could respond with as much equanimity as you have shown if faced with the same burdens.

That was over five years ago (during the Year of the Pajama) that he wrote those words to me. Sometimes I have had to hold onto those words with everything I have. I couldn't understand how I could be anything but a 'failure' to my doctors because I wasn't getting better.

It's not about whether I 'get better' or not. It's about whether or not I want to keep fighting. Over and over and over and over again. Dismissive doctor after dismissive doctor. Medication failure after medication failure. Setback after setback. Bedridden, homebound or out and about. One cycle of depression and anxiety after another, one cycle of grief and loss after another. 

A little voice inside me has always told me to to keep fighting. It's always told me that life is worth fighting for, and I thank G-d for that voice. And when that voice went almost silent, others sang the song for me.

The idea that my fight is invisible seems an interesting topic to approach this year in particular, because what most people are seeing in me now is someone who is much healthier and often appears very vibrant. One of my friends remarked that when she sees me out enjoying myself, it's difficult for her to remember that so much of my time still needs to go to resting or napping. It's difficult to believe that my whole day isn't as active or spent feeling so well.

I do feel so much more vibrant. And I have stretches of time during some days where I am only vaguely aware of my limitations. Most of the time though, I'm acutely aware of the fight inside my body. I am acutely aware of the limitations I am fighting against, so desperately wanting to gain more strength so I can engage in life more.

I love my new life so much. When I have a really bad day now, I can hardly make sense of how I ever fought through those really awful days and months and years. 

I think it's important this week, though, to remind myself and others that I'm still fighting a fight. I'm still fighting fatigue, pain, sitting up, standing up, doing a flight of stairs, getting out my own lunch, tachycardia, sweats, forceful heartbeats, difficulty sleeping, and on and on. I'm still fighting for more hours in the day that I am able to function. I'm still fighting for independence. I'm still fighting for more 'normalcy'. I'm still fighting grief and loss. 

Warrior

My fight may be invisible to the naked eye. But I've made part of my life's mission giving voice to my fight.

I am a WARRIOR. I am a FIGHTER. 

A special thanks to the Golden State Warriors and former Davidson College point guard, Stephen Curry, for winning the NBA finals this year after 40 years without a Warriors championship. This warrior and Warriors fan appreciated the win and all that it meant. Curry was a player considered too small and not good enough to be chosen by 'better' Division I teams, yet in his junior year he was drafted by the NBA to play for the Golden State Warriors. The Warriors had loyal fans who believed, but until recently, the team didn't have what it took to make it to the finals. Then after 40 years 'in the desert' (and the same year I turn 40!) the Warriors captured the NBA Championship. They're like The Little Engine that Could. They're FIGHTERS. 

I've never been a big sports fan, but I feel a special camaraderie with this team and with Curry's journey from my little alma mater to being the NBA's MVP. Watching the Warriors blossom at the same time my own life did was very emotional. 

It was as I watched this team known as the Warriors beat all of the odds, I realized that I, too, was a warrior.

I'm the refractory case that no one thought would get better. I'm the person who, it seemed, needed to accept that my life would never look like it does now. 

I fought. I fight. I will keep fighting. I am a warrior.

Be a dancing light,

Emily