Nurse Kim Asks...
When it comes to treating your relapsing multiple sclerosis (MS), you have the opportunity to be your own best advocate. Researching RMS treatments and learning more about MS is a huge part of that. Then, you can speak confidently with your healthcare team and take your care into your own hands. What does it mean to you to be your own best advocate? Why is it so important to educate yourself?
Being your own best advocate and educating yourself
July 23, 2018
Multiple sclerosis is a relentless disease. It sneaks in and damages the body before its host has any inkling that something is wrong. Once symptoms appear, damage has been done and the focus of MS treatment includes prevention of further damage. Knowing there isn’t a cure can make it terribly tempting to sit back and let healthcare providers do their thing to “fix” it and simply prescribe the option they think is best, without your input. But I would argue that giving in to that temptation is the first step to truly becoming a victim of MS rather than a person living well with MS.
Simply put, I try to do everything I can to help them help me. And that is what I believe it means to be your own best advocate.
Personal empowerment through knowledge can provide a sense of control and even an ability to fight back. MS is impersonal and the jury is still out on who it hits and why it hits certain people, but we do know that it is no longer limited to any specific demographic. There is an inherent fear of the unknown, but learning what MS is and what it isn’t can lessen that fear. With knowledge, the beast has a name, a personality, and characteristics. With knowledge comes the understanding that seeing a person with severe symptoms does not mean those same symptoms are inevitable for you.
Perhaps more importantly, knowledge can make you more aware of what is “normal” and help you to determine how you’re doing. Rather than awaiting your next scheduled neurologist appointment, which might be months away, if you know how the disease manifests in your body, you can identify changes much earlier and alert your healthcare providers. As an educated patient, you can be more hands-on in the treatment process and the selection of a relapsing MS medication that will fit into your lifestyle. Learning about emerging technologies and treatments may also help keep one all-important factor alive: Hope.
To me, self-advocacy is simply equipping yourself with knowledge about relapsing MS treatments, medications, your own medical history, etc., and proactively sharing that knowledge with your healthcare team. Since I started this journey, numerous neurologists and healthcare experts have treated me. At the moment, my primary care doctor and my neurologist are in two separate facilities nearly two hours apart. Neither of their records systems “talk” with the other. As a result, I became quite adept at ensuring each doctor knew what the other was doing. Being in the Army, I made sure that MRIs produced by the civilian neurologist found their way to my records in the military hospital and items such as lab work were copied to the neurology department. I keep a chronology of my medical history, current medical status, and an updated list of prescriptions, over-the-counter medications, and supplements on my smartphone so that I don’t have to play memory games when I see a doctor. Simply put, I try to do everything I can to help them help me. And that is what I believe it means to be your own best advocate.
Being your own best advocate and educating yourself
July 23, 2018
Think about it. With MS, you are at war.
To keep an enemy from gaining ground in your territory, it must be high priority for you to learn how to strategize. Strategy is the best way to defeat an enemy. Learn all about your enemy and their tactics. Don’t be caught off guard. Defend your territory!
This was my mindset when I decided it was important to educate myself on multiple sclerosis.
As a kid, I remember playing a game called Capture the Flag. It was played in the dark and nothing frightened me more than the dark. When someone would sneak up behind me, oh! It made me jump out of my skin! Being diagnosed with relapsing MS gave me that same feeling. I surely did not want an enemy to gain territory while I was in the dark, so to speak. The best strategy I had was to learn as much as I could about the enemy—relapsing multiple sclerosis.
I know you’ve seen this quote before, but whoever said, “Knowledge is Power” was truly right. Both my husband and I felt that the more we knew about relapsing MS, the less we feared it. It gave us a flashlight, of sorts. It shined the light on what was creeping around me.
I discovered strategies that helped to keep the enemy outside my camp. Not only did these strategies help squash my fear, but it also gave me ammunition to bring to my doctor. I asked questions to clarify some of the things I investigated. I learned all the information I could about the current research and what was coming down the pipeline. I was going on the offense.
My sister is also living with relapsing multiple sclerosis, but she has a different perspective than I do. When I talked with her about going on the offense, she told me that the more she knew, the more scared she became. I get it. It seems fair. Ignorance can be bliss for some people, but I want to encourage you not to think that way.
The earlier you can get a treatment for emerging relapsing MS, the better.
Being aware of an invasion early on is the best way to fight against relapsing MS. I have fought hard against that enemy, especially when it came for my eyes and tried to permanently take over my territory. I know that the earlier you can get a treatment for emerging relapsing MS, the better. Don’t wait. If you recognize that a symptom is lasting over 24 hours, CALL your doctor! Do not hesitate.
We all cope uniquely, just as MS manifests itself differently in everyone affected by it. However, I lovingly take on a self-appointed position to be a spy for my sister’s battles and look deeper into her MS myself, since she prefers not to. I don’t want to scare her too much, so I share reconnaissance with her in bits and pieces.
Nurse Kim Sums It Up
Taking the time to learn everything you can about MS, your symptoms, and your relapsing MS treatment options can help you to take action and advocate for yourself. Like Stewart and Pam said, after learning everything you can about MS, you may feel a sense of empowerment when speaking with your healthcare provider.
So pay attention to your body. If it’s saying something is wrong, tell your healthcare provider. Speaking up for yourself and starting treatment promptly following an MS diagnosis could make a difference in the long run. What tips do you have for being your own best advocate? Tell us in the comment section below.