This is a letter I wrote to myself right after getting diagnosed with EDS in 2014. It’s all the things I would have needed to hear from doctors, friends and family. And it’s also advice I gave myself. It was published by The Mighty in 2016. Maybe this text can help you if you are newly diagnosed and struggling with what this might mean to your life. Actually, I am quite surprised how much I followed my own inner voice. I can assure you, nothing is like it was in 2014 anymore. I grew so much. I found a new purpose, a new life, and overall: I found happiness. I mean, most of the time. I still get frustrated over my limitations every now and then. But life can be all the things you always wanted it to be – with or without EDS.
Dear newly-diagnosed-with-Ehlers-Danlos-syndrome Karina,
I know this was a shock. I know this changes everything, and all you can think is “holy shit.” And I know you have no idea if you should cry out loud or if you want to laugh because it was less shocking than it was a relief to finally know it is absolutely not just in your head.
It is real. All the years you suffered were real, and it was not your fault that nobody found the cause of your symptoms. You can be sure you did all you could to find a solution. There were some lucky coincidences along the way, but without your effort you would still be without a diagnosis. You have to stop thinking it is your fault you had all those wrong treatments and diagnoses. There is nothing more you could have done.
I know until this point you thought there would be an easy fix for this problem — a surgery, a medicine, something that would give you your life back. But let me tell you, this is your new life, and the sooner you accept it the easier it gets. You need to learn to live with your disability and not act against it. You have to accept your limitations.
Stop pushing through the pain. You are not doing any good for yourself. Stop thinking, “But I have to be able to do this.” The only thing you “have to” is survive. You need to stop trying to help everyone around you and start helping yourself. You were always a perfectionist, and I know how you struggle with simply not having enough energy for all the things you want to achieve. You now have to take care of yourself first. You have to learn that you have to set some priorities, because you cannot do everything on your to-do list.
You feel incomplete and less worthy because you are not able to have a job. You feel like you are not worth being loved because you lost everything you always defined yourself through. But you are wrong. You now have the chance to find the real you. You will find your personality, your fate, your passion. This is a chance and not a burden.
I know you tried to hide in your dreams where everything was fine. That is also OK. Sometimes you need a place to hide. You need a happy place where your life is like you always wanted it to be. But listen, you have to stop living in the past. The past is over. Your new life is scary and does not even partially look like what you imagined, but you always found new talents, and you will this time, too.
But you need to start seeing your future and planning your new life. This will be hard, but think about what you already achieved. You made it through four years of horrible symptoms and pretty much finding your diagnosis yourself. You can be proud of yourself, and even if you do not believe me right now, you will be happy again.
This diagnosis is not the end. It is simply the beginning of a different, but equally worthy life, and you will learn to be happy in a different way.
You will not expect it, but you will change for the better.
Just think about how strong you have been and what it takes not to give up. Remember how far you have come. You finally got your life-saving diagnosis, only because you did not stop questioning your doctors.
Your life will not be easy. There will be more challenges and you will feel like breaking apart. But listen, you are stronger than this.
I will now allow you to rest for some days. This was very exhausting for you. You will order your thoughts and cry about the life you have lost. You will be allowed to look back and grieve about all the things you cannot do anymore. But then you will see your future, and you will stand up and move right into it: your new life as a chronically ill person. I promise, you will be fine in the end.