Connecting With Other Endometriosis Patients Can Improve Your Life
These are strange times. Until there is a vaccine or the current pandemic is brought to a halt, most of us are going to be experiencing some form of isolation. So now, more than ever, it becomes especially important to connect. If you have a chronic illness like endometriosis, reaching out to others experiencing the same can be life-changing, in many positive ways.
It was through connecting with a friend that I got my diagnosis. For years, I had been living with painful, life-limiting symptoms. I was increasingly miserable and no doctors seemed to want to truly help me. Several shamelessly dismissed me: “It’s just stress”. Others gave up, admitting there was nothing else they could do to help me.
My friend had lived with endometriosis for several years. She was listening to one of my usual rants, and when I finished listing every single symptom I suffered, she said: “Jess, it sounds like you have what I have”. And with that simple sentence, she changed my life. I researched the disease, took note of every symptom I had, and begged a doctor to perform a laparoscopy. I finally received my diagnosis four months after talking to my friend, eight years after my first endometriosis-related complaint.
Illness-specific online forums can be incredibly helpful
While googling symptoms is a somewhat risky practice, there is a way of finding trustworthy information online. When newly-diagnosed, I had dozens of questions. The doctor that had performed the laparoscopy which had diagnosed me, knew very little about my disease. She gave me a piece of paper that stated I had endometriosis, but admitted to not knowing how to treat it.
Someone told me about support groups, and I found a local one, which exists mostly online. Whenever anyone asks a question, even if the answer is tricky, there is always support. They even organize a real-life meet-up every month.
Reaching out to fellow patients can improve your mental health
Endometriosis forums and Facebook groups can be a source of solace when all other options have run out. Right now, many appointments have been pushed back or canceled, something which is no news for endometriosis patients. Since we are not considered a priority, any treatment related to our disease will always go to the end of the line.
One in ten women of reproductive age suffer from endometriosis, yet it still takes an average of 7.5 years to get a diagnosis. There is not enough research aimed at endometriosis. Additionally, specialists of this disease are hard to find if you don’t know where to look. It can be incredibly isolating.
Fellow patients can be your best support team
Reach out whenever an appointment is canceled. Speak to other patients whenever a doctor offers a treatment you are unsure about. Don’t assume that because no one in your immediate surroundings suffers from this disease, there is no one out there that would get how it feels to walk in your shoes.
You are not alone. For starters, our community here at Endometriosis.net is a safe place for questions, fears, or the littlest of doubts. All you have to do is start typing. On the other side of your screen, there will someone going through the same as you, recognizing themselves in your words, and offering the support you never thought you needed.
Do you know someone that has made a difference with endometriosis advocacy?