Being diagnosed with a chronic illness basically means that you are up for a never ending marathon. At least, that is what it feels like. Not an ordinary marathon though, the kind that has obsticals that show up unexpectedly. Most likely when you think you have it together and all figured out. You will get knocked down, but boy don’t we know how to get up again. And yes, I know there is a song about that.
Endo will change a young girls life, in ways many people won’t ever understand. The time it takes to get diagnosed, the insecurity this disease brings and most of all having a body that is acting out of control at the most inconvenient times are things that shape a personality. Dreams about college and a job have to compete with a disease that is present 24/7.
Later in life you have endured many visits to the ER, hospitalisations and your bathroom will look like a drug store. In fact, you will probably know more about meds than the average med student.
Exactly this, is something I talked about to one of my best friends who lives in New York. We met in the city years ago on a patient day of the EFA. The fact that we have to do our own research and tell doctors about our condition and how it is treated in the best way, is just nuts. Over the years a women with endo will experience that a skilled doctor is hard to find. And that most of the time we are the ones that have to educate.
I bet we are all familiar with friends, familiy or coworkers that don’t understand how a disease can influence every aspect of your day. Who will tell you to just let go, go on a holiday and assure you doctors will know more than you. So basically we are told to stop doing research on our own condition. And trust people who many times don’t have a clue of what we are talking about and are just downing in all the info we give them when we really open up answering the question of what exactly is going on. This unfortunately is the experience most endo women have. That when you finally have the courage to open up to a doctor, you won’t be believed because endo can be so complicated and is experienced differently for every single woman. As a result, until endo will be correctly diagnosed and be seen as a whole-body disease, only symptoms will be treated. Which will allow endo to grow and do more harm over time.
Big shout out though to those few doctors who do take time to listen, treat in an effective way and learn more about endo. These heroes make a change for many women and will contribute to cut down the time it takes to get diagnosed.
We are skilled to face the fight every day and even fight without noticing anymore. Exactly this way of life makes us face everything with no boundaries. We deal. We are used to deal. We learned this the hard way. Yet exactly this provides us with a strong will to keep pushing. The way endo changes or lives makes us appreciate the little things in life even more. It encourages us to lift up other women and educate, so that young girls don’t have to go through all the madness most of us had to face before taken seriously.
Our goal is to make changes in the way endo is diagnosed and treated. To spread awareness and to make sure this whole-body chronic disease that affects 200 milion girls, women and transgender individuals will be recognized.