That Inner Bada**

I’m a chronic illness patient who spends most of her time between her bed & bathroom or shuffling to appointments. I’ve been doing this little dance for over ten years as an adult, and another six as a minor.

I’ve been called directly or indirectly: liar, cheater, attention-seeker, faker, hormonal, worrier, problem child, and difficult. 

None of this is true. And it’s forced me to become not just my own advocate but a warrior in an arena I should never have been forced into. I’m done with it.

I’m fighting to survive and make a life for myself. My family and I have been doing so for years.

Don’t tell me I’m wrong about the medically verified diagnosis and information I’ve been given. Especially if you can’t even speak intelligently about my chronic illness. It wouldn’t serve you to underestimate me either. 

I have a strength I never asked for but have gained through a long fight. A fight to survive, to have a life bigger than just surviving. 

Don’t push me in a corner. Don’t box me into some construct you’ve created in your mind for me. 

You won’t believe the fighter that gets back up and into the ring. 

Thoughts on a Stressful Few Days

 I’m tired.

Deep in the bone, world weary tired.

And believe it or not, it’s not from my gastroparesis.

I’m tired of being penalized for having a chronic illness.

I get it. I’m a thirty something woman. I don’t fall under the “accepted” picture of what someone thinks of when they think of debilitating health condition.

None of that changes the fact that I am. I have severe pain, difficulty getting adequate nutrition and hydration, lost weight, severe nausea, and I spend way too much time in the bathroom.

 

Let me be clear: I am beyond grateful for my doctors and nurses. I’m grateful to all the doctors, nurses, and essential workers who are battling COVID, natural disasters, and all they do that no one sees.

 

My frustration is with the suits sitting at the top of medical institutions, insurance companies, and drug companies who place profit over someone’s life. These individuals who sit comfortably in their fancy chairs in their homes and offices that are worth three times more than a typical household.          

Healthcare is complicated. Economics is complicated.

I get it. I studied one in college and I’m becoming a professional patient in the other.

I’m frustrated beyond words at the bureaucrats who pay little for their own insurance but deem themselves fit to dictate mine. Senators and Congress Members who are more concerned with lobbyists paying for their next campaign then the doctors, nurses, and patients waging wars against horrible diseases.

 

We deserve better. All of us who are battling things that were never our fault. Evils that often rob us of our ability to work and live even a fraction of what we imagined for ourselves.

I will continue to listen to the doctor’s instructions to manage my chronic illness. I don’t really have a choice other than to fight even though the system is broken and my body is broken.

I keep fighting because I know I’m worth it. Life’s worth it. I’ll get myself back up and into the ring. 

I’m just tired.

And we all deserve better.