What Does Self-Advocacy Mean?
You constantly hear the phrase that you need to advocate for yourself with doctors and in appointments you hear how you need to stand up for yourself. And, if you feel uncomfortable about some thing a doctor says, you have every right to rebottle it. But how do we do this is patience and his advocates? How can we effectively convey our message to doctors without reverting to the natural human tactic of attacking?
Lean into caregivers and prep for appointments
Here are some strategies that have helped me so far:
If you have the privilege of having a caregiver, utilize your caregiver. Two brains are better than one.
Preplan before appointments, so that you have all of your questions that need answered. You can even order them in level of importance. When I first step in to a doctors office, I kindly ask him to let me speak without any objection. I will give my spiel on what it is that I need and what I’m looking for from that doctor. Then, I give the doctor a chance to refute my statement or agree with it.
Do your research
Unfortunately, a lot of doctors have built up this ego of not wanting to be wrong. Many times, doctors have tried to tell me that the course of treatment that I was on was not good and that I needed to be off of it. I would show up with binders full of documents, stating why it is that I feel the way I feel and why I know what I have researched is a better option for myself.
Many of times, I was educating the doctors which can be so uncomfortable for a 19-year-old who had no college education. I didn’t know the medical jargon, so I taught myself. I didn’t know the inner workings of the disease, so I taught myself. I often see these in my articles, but knowledge is power.
Keep medical information organized
If you have a chance to use that to your advantage, binders are such a good way to keep all of your medical information that needs to be accessed quickly on hand. I can say that in this binder, I keep a list of my medications, recent test results, or a list of diagnoses. I’ve even gone to the extent of putting scans in the binder.
There’s been many times doctors didn’t want to hear me because they were on a 15-minute time crunch. That’s when you respectfully tell them that you are going to take 14 minutes to get what you need to get out because your health and wellness is way more important than a doctor being 10 minutes late for their next appointment. Their job is to help you and you should never have to feel like you have to work harder than they do for care.
We are building knowledge of NMOSD and MOGAD in the rare community, but it still is going to take a lot of advocacy for people to understand that sometimes we really do know what we need and what’s best.
Case studies help back up your claims
Along with caregivers and binders, you can bring case studies. I know what you’re thinking – when I say case study, do you think of a long medical document with lots of jargon on it? Probably. But, the beauty of technology is you have the power to use the search tool on a lot of medical research papers. You can use it to find keywords and jump to those sections that you need to read. Giving doctors case studies with highlighted words in annotations can back up your thoughts on your care.
Just because we don't have medical career or experience doesn’t mean we have no idea what we’re talking about. At the end of the day, we live this disease, not the doctors. The doctors can tell us what they’ve read, but they could never tell us how we feel. It’s up to us to stand that ground. It’s so uncomfortable dealing with confrontation and there’s been a lot of doctors that I felt disrespected me. That's why I came in with my own information on treatment, but there’s never been a time I was wrong.
Self-advocacy is important
There are so many advocates like myself who are willing to help stand up to people and doctors who aren’t willing to listen. Over the past 5 years, I’ve called families, friends, and even talked to medical professionals about treatment for this disease. Know that you are your own advocate and you are your best advocate.
Were you misdiagnosed, prior to being diagnosed with NMOSD?