Today is the big day. It is not your big day as in graduation or a wedding, nonetheless, it is still a big day that will change your life forever. Today is diagnosis day. The day you were given a diagnosis of Mitochondrial disease. Unfortunately, you have known about this possibility for months. Today is meant only to be a formality. I am sorry, you deserve more than this.
Your brain will try to protect you by convincing yourself they are wrong. You’ll beg for them to be wrong, but we both know that is an unrealistic scenario. You’ll try to cope by putting in your headphones and turning up the music in order to drown out the bad. You will do what you need to in order to survive. Here is the problem, you cannot live in survival mode for the rest of your life. Although that will not stop you from trying. You will continue to shut people out. I know you are trying to protect others and yourself, but it is not healthy. Knowing what I know now this is how I wish you would react: I pray you let yourself feel what you need to feel. I pray you let others hold you. I pray you decide to save yourself for once. You put yourself through more hell than necessary if you decide not to do these things. I am so sorry you will decide otherwise.
At my diagnosis appointment, my mom took a photo of me in the waiting room without my knowledge. I saw the photo for the first time several months ago while looking through photo albums on the computer. This photo is what prompted me to write this post during awareness week.
In writing this I have a responsibility to prepare you for the hurt you will face. You’ll feel defeated. Many days you will forget the good. You’ll promise others you are okay but secretly you cry alone in your room. You will scream in pain. You will be robbed of your teenage years. You will lose your independence. You will lose the person you thought you are. You will face your own mortality. I am sorry for all you must endure.
I also feel the responsibility to remind you there will be good within this diagnosis. You will find happiness. You will make it farther than expected. You will find someone who loves you despite your diagnosis. You will experience what you thought was impossible. You will help others heal through the words you share.
Lastly, I would like to recognize: You are not damaged goods. You are brave. You are resilient. You are loved. And you are my hero. I am so proud of you!
September 15th-19th, 2020 is Mitochondrial Disease Awareness Week.
To learn more about Mitochondrial disease: https://www.umdf.org/what-is-mitochondrial-disease/
An awareness post of mine that helps explain the diagnosis: https://chronicallyawesome23.blogspot.com/2015/09/mitochondrial-disease-awareness-week.html