Today my friend Micheala was published. She wrote an article on a forum about a letter to her illness (Gastroparesis) in which she adressed what she had to say to it. I’m so proud of her as we all fight so strongly to make our voices heard and she’s always done an amazing job at it. You can read her article here: http://themighty.com/2015/03/to-the-condition-that-keeps-me-from-being-a-normal-teenager-thank-you/
Recently a lot of things have happened in the medical world around POTS and it seems that we are beginning to enter a period where it will no longer be a mystery but rather something all physicians are aware of, however that is hopeful dreaming today and we still have a long way to go to make that happen. I started thinking about what I personally would say if I could write to my illness and it would go something like this:
It’s nice to finally see you. After so many years now of you being invisible well it’s nice to meet you. It’s nice to meet you because for so long I have always had the thought in the back of my head that maybe this was all just made up. It’s nice to meet you because doctors told me I was crazy since you never showed yourself. You don’t pop up as tangible evidence and because of that you have caused me so much pain. You have made me doubt myself so many times throughout life because I can’t see you and I worry that all the other things I can’t see well maybe they’re not there just like you. So it’s nice to finally see you because now I know I’m not crazy, that all the times I have scraped my knees falling, all the times I couldn’t catch my breath, when I couldn’t get out of bed they were all real, they weren’t in my head and I wasn’t doing it to myself.
It’s nice to know you’re real but sometimes I still wish you weren’t because maybe then I could find a way to get over you and move on with my life but I can’t. I can’t because there’s no way for me to completely throw you away you’re stuck to me like handcuffs and you weigh me down and you hold me back. You are a burden POTS and you will always be one.
You cause me to stay up at night tossing and turning because I will never be able to predict wether tomorrow will be a good day or a bad day. You are unpredictable and I hate that about you. You throw curveballs at me when I least expect them and you take from me without giving back. You steal things when I need them the most. You take friendships and you take opportunities, and this week you’ve reached a point I never thought I would see. This week you took the life of someone that fought you until you took too much and she took her life because of you and that makes me mad.
The worst part about you though the worst part is that even after all of this I am still thankful for you. That even after all the nights I’ve spent in the hospital, all the medications I’ve swallowed, all the doctors I’ve been to, and all the opportunities I have missed out on I’m still thankful for you and that makes it so hard. I’m thankful for you because you’ve given me a perception on life I never would have had. You’ve taught me to live life outside of the normal and to learn to be different. You’ve taught me to love myself even when all I could feel was broken. You’ve shown me real friendship and you’ve taught me what it’s like to be left to fight the battle alone. You’ve given me a life that isn’t covered in sparkly happiness and you’ve taught me how to be blessed when I’ve felt I had nothing. You’ve made me grow up and mature so much faster than all of those around me. You’ve taught me the beauty in the simple things and so much more. Because of all of this on even the darkest days like today when I want to hate you more than anything I still can’t because you’ve given me things some people will live their whole lives without seeing.
It’s nice to finally see you but I am not your friend. You are a beast and you continue to take but you will not win.
You do not get to be the victorious one in this battle, it’s my turn to win.
Your not friend,