I always love the Health Activist Writer’s Month. Thirty days of topics that I believe have tremendous meaning to the health community from activists from all over. I thought I could do it this year, and I know I can do some, like this topic, this topic is important. A letter that I would write from the future to myself for the day I was diagnosed knowing then what I know now.
I wish that every patient had the information of a veteran patient in an envelope in their hands the moment they were diagnosed.
It is April 24, 2012, and you are at UCLA. I am glad you are not alone. I am glad you had wonderful friends who knew the right people, the right doctor. I am writing from the future, from November 4th, 2016.
When you heard, so quickly, so easily, and finally, “You have EDS”, you were not surprised. Just because you are not surprised does not mean that you should not take your time today. Slow your roll and ask questions. Think about the long term of your treatment. Even if you are not afraid, even if you are more relieved than worried, just slow down.
You need a treatment plan. This is about more than your pain.
Take a breath and read this carefully and objectively like I know you can. Read this like the teacher, the person that guides others. Let me guide you through the toughest part of EDS. You know this already, it is in the back of your mind, but: In a few years, you will have arthritis everywhere. Your spine will be a wreck, you will be surprised at the changes in your body. You will be so afraid, and you will be afraid to tell anyone that you are afraid. Don’t be afraid to say, “I am afraid”. There is no weakness in fear, we are all afraid when illness changes our bodies. Do not shut yourself away in fear.
If you feel like you are not getting the support you need, do something about it that is positive and helpful. Think before you leap because you are going to think about leaping.
But it ain’t all bad, woman! And, it will be better if you make a plan!
You will meet an amazing pain management doctor that will make these transitions easier.
So, make a plan.
It has been down that long road to diagnosis and you are relieved, you are amazed, you are excited. Finally, an answer! When the euphoria wears off and you think, “ok, now what?” I will tell you what. If you don’t make a plan you are going to lose it. And, if you do lose it, I want you to remember that on the other side of a pretty insane tunnel is me. Future us is not too shabby.
We are good. We are happy. We are strong. We probably drink too much coffee, yet we still take naps. We walk dogs, read books, and best of all we help people. We are Chronically Awesome. We have a plan and we stick to it.
Make your treatment plan before you walk out of that door: you have your diagnosis now, so go get the right rheumatologist. This is an excellent doctor but he does not specialize in EDS. You have some pain management to help you until you do, so go and get that great doctor. Walk, listen to books and music. Don’t smoke. Drink water.
Call your parents every week.
Lastly, you are going to have many opportunities in this health community you have joined. Take them, do your best, you cannot trust everyone but you will find people that you can lift up and will, in turn, lift you up. There are people that will always be there for you, and you, in turn, will be there for them. You may get burned a few times but I want you to keep that big heart that few people know is there behind that sarcastic, foul mouth.
With much love, from your future,