About me

Hi everyone! For those of you wondering who I am and why I'm doing this, here is a little backstory:

My name is Daphne. I am 32 years old and work as a registered nurse at a children's hospital in Stockholm, Sweden. I also have endometriosis and, as a consequence, I have suffered from severe pain ever since I got my first period, approximately 20 years ago.

As many other women, I spent the first 10 years wondering what was wrong with me. The pain was unbearable and affected every part of my life. I saw a bunch of different doctors and spent countless nights at the ER, but everyone always came to the same conclusion: everything looked normal. I was constantly disbelieved, accused of exaggerating the symptoms, or told that it was all because of stress and mental illness. When I started feeling anxious and hopeless because of the whole situation, that just "proved their point ". Eventually, I started wondering if maybe they were right and I was just going crazy or making everything up.

After 10 years and a lot of convincing, I finally had a laparoscopy and got the diagnosis. I can't even begin to explain how relieved I felt when I got an explanation after such a long time - proof that I wasn't crazy, after all. However, the diagnosis didn't help as much as I had hoped. Despite being referred to both an endometriosis center and a pain management team, things just got worse. When the first hormonal treatment I tried didn't work, I was told there was nothing left to do and that my only option was to "suck it up". Meanwhile, the huge amount of painkillers I had been prescribed had caused a serious opioid dependency which the pain management team refused to help me with.

Somewhere in the middle of all of this, I started nursing school. When the time came to start writing my bachelor's thesis, there was no doubt in my mind that I wanted to write about chronic pain. However, I decided to change the perspective a little and write about nurses' experiences of caring for chronic pain patients. As I did my research and held my interviews, I began seeing the other side of the story, and things started falling into place. 

The healthcare that most people with chronic pain receive is inadequate and unacceptable, and I believe there are two main reasons for this. 

• The first one is a lack of knowledge, both among healthcare professionals and patients. A nurse or a doctor who doesn't understand the complexity of chronic pain won't be able to help or support their patients properly, and a patient who doesn't have enough knowledge can't take an active part in their own treatment. 
• The second reason is the inability to understand the other perspective. I truly believe that most challenges and conflicts between patients and healthcare professionals are based on misunderstandings. (And how do you prevent that? By communicating and sharing knowledge.)
  

This is why I've made it my mission to spread knowledge about chronic pain and endometriosis. Apart from working on this website and my Instagram account (which are primarily aimed at patients and their loved ones), I also hold lectures for healthcare professionals and nursing students. For more information about these lectures, click here. If you have any suggestions on how to continue spreading information, or if you would like to help, you are more than welcome to contact me.

(And, as for me, I finally have an amazing endometriosis specialist who has done (and still does) everything in her power to help me, as well as a very competent pain specialist who helps me during my flares. It definitely isn't easy, but I'm still hanging on!)