“Self-advocacy” sounds so empowering and clean when you say it out loud. A neat, controlled, confident phrase. It makes you feel like the kind of person who knows exactly what they need and is not afraid to ask for it.
Living with MS and working in the MS space has taught me it is rarely that simple.
Multiple sclerosis does not follow a universal script. What progression looks like for one person may not be my experience at all. Symptoms fluctuate. MRIs can appear stable while subtle changes linger in the background and something still feels off. Because of that, self-advocacy is not a skill I can master and check off a list. It is an ongoing practice that requires me to ebb and flow.
Before I can advocate for myself, I have to slow down long enough to understand what I am actually experiencing. I have to listen, notice patterns, and be honest with myself. Is this new? Is it worsening? Is it stress? That internal work is not glamorous, and it is never finished. Treatment plans may shift. My energy may shift. My capacity may shift. Self-advocacy, for me, means being willing to recalibrate without seeing it as failure.
It also means translating my experience depending on who I am talking to.
With my neurologist, I focus on specifics such as timelines, patterns, and functional impact. With my kids, I simplify. I share enough truth to help them understand why Mom needs to rest without placing adult uncertainty on their shoulders. With friends and family, I often find myself bridging the gap between “You look great” and “I am working very hard to look great.” The message is the same. The language changes.
If I am honest, I do not always do this well. There are times I hesitate to ask questions or voice concerns because I want to appear steady, capable, and in control. I want to seem like I have it all handled, especially when it comes to my own body. Admitting I am unsure can feel like I have lost my grip (and I’m a Capricorn, so this is not allowed).
There is also the quiet fear of being a burden. Self-advocacy sometimes means asking for flexibility, patience, or help. Even when people have shown up for me before, there is still a voice that says do not be too much. Do not make this harder for anyone else.
But advocacy requires trust. Trust that the people in my circles genuinely want to help. Trust that inviting them in is not burdening them. It is giving them the opportunity to love me well. Needing support does not negate strength.
I have come to believe that self-advocacy is not about perfect clarity. It is about being willing to say, “Something feels different,” even if I cannot fully explain it yet. It is not polished. It is practiced. The goal is not perfection. It is progress.
