by Madison Corley, owner and founder of The Endo Resistance Project
TW: brief mention of the following: fertility, narcotics, PTSD / trauma , weight
In a perfect world, patients would not have to advocate for themselves to doctors. However, unfortunately, the reality is that doctors have different levels of education and experience with endometriosis. Therefore, as patients with endo, we often have to speak up and advocate for ourselves to medical professionals. Use this guide to build better self-advocacy habits and ultimately strengthen your voice as a patient.
1. Write Down Q's and A's
The biggest thing that helps me when I’m feeling anxious regarding my endometriosis pain and symptoms is to write down questions in my phone’s notes app. I come up with a variety of questions... Will this surgery effect my fertility in the future? Are these symptoms indicative of another issue outside of endometriosis? Should I be bleeding this much?
Then, when I go to see my doctor, I don’t forget any of my concerns. I have a nice list of all my questions and new symptoms from the previous weeks/months so I can go through them and ask my doctor. I also write down my doctor’s answers so that later, when I’m home and randomly get anxious, I can refer back to my doctor’s commentary.
2. Articulate Your Goals
It may sound obvious, but it’s important to communicate your goals with doctors. They
may forget to ask and make assumptions about things like fertility, medication preferences, the plan of action for treatment. I like to make my doctor(s) aware that I want to preserve my fertility if possible, but that no pain is my #1 goal. This helps prevent doctors from assuming that I want to have a baby anytime soon. This, hopefully, shuts down the "just have a baby!" remarks that doctors sometimes make.
3. Explain Your Pain
It is important that your doctor(s) understands your level of pain and other symptoms, and how this is affecting your life. You can use our downloadable pain and symptom trackers from our Printables page, under the Information dropdown, to show these important factors to your doctor. This can help show your doctor that this is not “normal pain”.
These trackers are also very helpful because it's easy to forget all of the symptoms and varying pain levels that you've experienced in the prior weeks/months since your last doctor's visit.
4. Set Boundaries
Being assertive gets you a long way when it comes to self-advocacy. Right at the start of
your first appointment with a new doctor, make them aware of any accommodations or boundaries that you fee they need to know. These boundaries can include issues with narcotic drugs or other medications, PTSD/trauma (sexual, medical, etc.), not wanting to be told your weight after being weighed, etc.
5. Listen to Your Body
Though doctors are educated and experienced, nobody - and I mean nobody - knows your body better than you do. If you feel like you are having a certain problem, or that a certain treatment isn’t working, and your doctor disagrees, keep fighting. Get another opinion, too!
6. Do Your Own Research
It goes without saying that you shouldn't have to be your own doctor. Unfortunately, each doctor has a different level of understanding in regards to endometriosis. This stems from a lack of funding and research on the illness. This means that it's up to us, as endo warriors, to question our doctors, to get second opinions, and to do our own research. Check out our Resources page for various sites to look at and groups to join that allow you to arm yourself with information.
After all, knowledge is power!
7. Keep Your Own Records
Part of our 'job' as patients with a chronic illness is to hold our doctor(s) accountable. We cannot blindly trust doctors to keep track of our medical history, all of our previous appointments and tests, our preferences, etc. The things that I like to keep record of for each appointment are...
-Appointment date/time
-Purpose of appointment
-Any testing or procedures done
-The results of any stats/vitals that the doctor or nurse takes
-Questions I asked and any issues I brought up
-The doctor's answers to these questions
-Any additional commentary from the doctor
You can find a printable sheet with spaces to record all of this information in the Printables page! This is also something that you can find in My Endometriosis Journal by The Sour Collective.
8. Get Support From a Loved One
With all of the physical issues/symptoms that can come with endometriosis, our doctors often have a lot of information to tell us. There's a lot that we need to remember before, during, and after the appointment. On top of that, these appointments can also feel invasive and overwhelming emotionally.
Don't be afraid to call a friend or family member. Due to the pandemic, it is unlikely that they can join you during your appointment. However, you may be able to keep them on the phone during your appointment, with your doctor's permission, so they can act as an extra set of ears and so they can be there to support you. Alternatively, you can ask a friend to drive you to and from the appointment, so that they can be there for you when you're done.
9. Get There Early
Arriving early to doctors' appointments allows me to take some time in the waiting room to breathe, relax, center myself, and remember my questions. I can go over what I want to discuss with my doctor in my head, and sort of amp myself up to be open and honest about my pain. In addition, arriving early can sometimes allow the doctor to see you earlier and spend a bit more time with you before seeing their next patient.
10. Don't Be Afraid to Push Back and Disagree
Although it's often more comfortable to be a people pleaser and a "yes man", it's important that we challenge our doctors when they say something we disagree with or have questions about, especially pertaining to our care. If you feel any concern about anything the doctor says or suggests, call them on it and ask them to clarify! If they are glossing over the idea of trying a treatment or medication you don't like, make sure to reiterate your preferences. It may be uncomfortable, but you are not in the wrong for taking control of your own care. You can remain friendly and kind while also standing up for yourself.
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