Self-Advocacy Tips for Endo Warriors
One important aspect of managing a chronic health condition, like endometriosis, is being able to self-advocate. I believe a lot of damage can be done to an individual’s health care when they simply allow a doctor to manage all the care, without any self-advocacy being done.
What is self-advocacy?
While it may seem scary at first, advocating for yourself is important and not overly complicated. Self-advocacy involves knowing yourself, your needs, and how to create a plan to get what you need. When it comes to advocating for yourself in the medical arena, this involves managing elements such as your doctors, treatments, and medications. This causes you to become an active participant in your own health care.
Don't be afraid to fire your doctor
One major area of advocating for yourself is making sure that you receive appropriate care from your medical team. When I first started seeking treatment for endometriosis, I went through several gynecologists before I was able to find one who would take my case seriously. Almost 20 years ago, doctors did not want to diagnosis a young teen with endometriosis despite having a family history of severe endometriosis. Several of the doctors tried to tell my mother and I that it was mainly "in my head" and I was "just depressed". Once the doctors made this type of diagnosis, we would look for a different doctor, because we knew it was pointless to have a doctor who would not take my case seriously. I even changed specialists when the one I was seeing ran out of ideas to further treat me and my pain was still out of control.
The way I believe you should look at your medical team is by considering them employees. You (and your insurance) pay your doctor to treat and improve your health. If the doctor you are seeing either does not take your complaints seriously or no longer knows how to handle your case, you should fire them. It is especially important to your health to have doctors who consider your issues and who can continue to treat you. This requires work on your end to research all the doctors on your insurance in attempt to find a good one. By knowing what type of care you want and need from your doctor, you can then refuse to settle for less than that.
Know all of your options for medications and treatments
Another area that is important to advocate for yourself is with your medications and treatments. Most of the time when a doctor gives patients a prescription, the patient just takes it. With self-advocacy, you should research medications and talk to others who have tried them. Today, there are so many ways to communicate with other people who have endometriosis online. It is a shame to not take in their experiences. If there is a medication or treatment that you are interested in trying, bring it up to doctor at your appointment. On that same note, if you are on a medication and are dealing with side effects, you need to discuss this with the doctor as well.
I learned the hard way to investigate medications instead of solely relying on a doctor’s opinion. I ended up with severe bone density loss by staying on Lupron for way too long. By the time I switched doctors, I had to take prescription medication for years to reverse the damage done to my bone density. If I had investigated the Lupron treatment myself, I would have seen all the information on the effects of being on Lupron and the recommended length of the treatment.
Why self-advocacy matters
Self-advocacy can be the best tool to managing your healthcare. It places you in a unique position to be active in getting the best care possible for yourself. My own personal treatment took a much more positive path once I decided to put effort into finding the best doctors, medications, and treatment plans, then having the courage to bring my thoughts and opinions to my doctor. Once you master advocating for yourself, you will be able to help others.
Do you know someone that has made a difference with endometriosis advocacy?