It is rare disease day. Get it? Feb 29? Rare disease? Hardy har har. Clever, eh?
There are so many things I wish someone had told me before being diagnosed with rare disease. I have many – POTS. CVS. Immune issues. Hyper mobility syndrome. The list goes on and on. Many of them I was born with, others I grew into.
People with rare disease look just like anyone else. When I am just hanging out, I look like anyone else. I look like I am healthy, even though my body is slowly killing me.
But there are so many things I wish I had known.
I wish I had known how lonely it was. How isolating it was.
I wish I had known how depressing it was.
I wish I had known it wasn’t lucky to have to drop out of college. To not be able to get a job and rely on disability. To be able to sit in bed and play video games and watch Captain America all day – because frankly, some days I am too sick for even that. Frankly, some days I am too sick to even turn on my laptop.
I wish I had known how soul crushing it was to have my hopes and dreams yanked away from me. To never achieve my dream career. To know my dream job is out there but to be incapable of getting it.
I wish I had known how big of asshats doctors and nurses can be. To not be believed. To be perceived as attention seeking. To be told it’s all in my head. To be nearly killed by the mistakes of doctors and nurses.
I wish I had known what intractable pain was truly like. That as I got older and as time went on, the pain would only get worse, and not better. I would become resistant to more and more medications. Have surgeries as a desperate attempt to not be in horrifying pain all the time… and have them fail.
I wish someone had told me how much it would impact my depression. That there would be days I would be so depressed I couldn’t move. Couldn’t eat. Couldn’t sleep.
I wish someone had told me there would be days where I literally have to ration out my energy and decide between peeing and showering. Eating or showering. Getting the mail or making a phone call. The fine juggling act would become a daily battle, and it isn’t just a one off thing.
I wish someone had told me all these things…
But you know what else?
I wish someone had told me that there are people out there who understand. That there are medical communities, zebra communities, spoonie communities… a place where we all understand each other, even though our disorders are not all the same – even though we have different medical histories, we understand.
I wish someone had told me I would find my true friends who are there in thick and thin. The ones who would distract me while getting injections. Who would get me stuffed animals that now accompany me to the hospital. Who blow up my phone and facebook wall when I need them.
I wish someone had told me that I would still find hope. Not hope for a cure, but hope for a treatment.
I wish someone had told me I can still make a difference in the world. Not in the way I thought I would, but in other ways.
I wish someone had told me that I am more than a list of medications and medical disorders, and one day I would believe that.
I wish someone had told me that despite my disorders and medical history, I would still be able to fly across the world to visit some of my favorite people in the world. That I would make incredible friendships. And even though I would lose one of them – my beloved Beth – her impact would never leave me.
I wish someone had told me that there are good doctors and nurses out there. Ones who believe me. Ones who advocate for me. Ones who will literally save my life.
There are so many things I wish I was told. And so now, I am telling them to you.
Alone we are rare.
Together we are strong.