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6 Steps to Being Your Own Endo Advocate

Posted on July 14, 2016

by Mara Rose. Mara has been living with chronic pain and endometriosis for the last 15 years.

When I was in my late teens and early 20’s, I saw a lot of doctors before being diagnosed with fibromyalgia, endometriosis and a slew of spine issues. We were working towards finding a diagnosis and the process was unbearably frustrating. I constantly felt judged and since I was so young, some doctors seemed to dismiss my pain issues.

I remember a doctor saying that the “description of your symptoms are inconsistent.” At the time I felt crazy. Absolutely crazy. It seemed liked no one believed me.

How was I to know at the time that chronic pain is exactly that – inconsistent and random!?

I wish I knew then what I know now.

Thankfully there appears to be more awareness and understanding for chronic conditions and illnesses. Or maybe people take me seriously now that I’m beyond the age of 30.

Now that I’ve been through six surgeries and 16 years of chronic pain… I can honestly say that I’ve developed an understanding of being a patient with a chronic illness. This certainly doesn’t make it easy. Unfortunately, not everyone in the healthcare field will understand your disease or illness… and not everyone will care.

That is why it’s so important to be your own advocate and be knowledgeable about your illness.

Let’s be honest. This is a tough subject – especially for people with chronic illness. Something that I still struggle with is being my own advocate. Doctors can often intimidate me, but I’m learning to find my voice.

How to Be Your Own Advocate

  1. Ask Questions. Simple, right? But let’s put it this way… when it comes to treatment for your body, you have every right to ask questions. Why are you prescribing that? What is that test for? What does that term mean? Why haven’t you tried this?
  2. Learn about your illness. Research, research, research!! If you were diagnosed with something that will be with you for a lifetime, it is YOUR responsibility to understand everything about it. Everything. Sometimes I am absolutely baffled by women that have Endo and seem to know nothing about it. Knowledge is power, ladies!! (Tip: Go beyond the MayoClinic and WebMD to get your resources!)
  3. Connect with support communities. There are a lot of resources online. Personally, I’ve found it helpful to connect with Endo support groups on Twitter and Facebook. Ask your doctor if your clinic or local hospital offers any peer support groups – sometimes being around like-minded individuals can be very healing.
  4. Don’t ever rule out mental health. A huge component of getting well starts with your brain. I spent a lot of years focused on the physical aspect of my own health. Your mind is a powerful tool that needs to be cared for too.
  5. Be honest with your doctor. Are you feeling anxious about some tests? Are you nervous about a prognosis? Do you feel like you might get better care elsewhere? This is YOUR life, therefore you have the right to tell the doctor HOW you feel. Holding everything in could actually impact your care.
  6. Get support from loved ones. As a person living with a chronic illness – I can tell you how easy it is to slip up and take matters into my own hands. I would probably be in a bad place if I didn’t have so many loving, supportive people in my life. Listen to your loved ones and remember how much they care for you!

This post originally appeared on WordsByMara.com and is reposted here with permission.

Mara Rose is a writer living with endometriosis, adenomyosis, fibromyalgia and degenerative disc “disease.” She lives in Wisconsin with her husband and son, Micah. She’s active in the endometriosis and chronic pain online communities, and she’s currently working to develop local patient mentor programs in her area.

A MyEndometriosisTeam Member said:

Having a patient mentor would be great I manage multiple chronic diagnoses as well and it can be very lonely. You don’t want to say anything because… read more

posted about 1 month ago

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