An Advocate Without a Ribbon

Last updated: September 2022

This past March was another multiple sclerosis awareness month of lost opportunities. Each year I have lofty goals to participate in every activity available. I want to support my chronic illness community during our most visible month. I really really do. Yet, this is not the first year that I have failed to live up to my own hopes. The difference between this time last year and the same time this year is that I have given up thinking about March.

My history with awareness ribbons

I looked at what I do the rest of the year. It was not looking at what I involved myself in, but about how I show up outside. Literally, outside. I do not wear an orange ribbon. I have only rarely worn an orange ribbon. If I counted on one hand, it would only be to make myself feel better to think I could actually fill a hand. This is not an attempt at self-deprecating humor. It is a fact. Is it time that I start to do that?

Why do I care?

Most of us have the ability to choose what clothing we wear in our private lives. Those are, of course, dependent upon cost, availability, taste, and a host of other variables. Some reading the subheading are saying the very same thing to themselves. "Why do I care about whether or not to wear an orange ribbon? Do it or do not do it, and spare us the drama." I could do that, or I could share my own doubts and maybe make a few other people feel heard.

The fact of the matter is that this has crossed my mind several times over the last couple of years. When I was first diagnosed, it never crossed my mind. It was at a point where the concept of ribbon-fatigue was a running joke. There was a guide listing ribbon colors for causes that had some colors sharing multiple illnesses and causes.

Rethinking my advocacy

As time has gone on, and I have become a sort of advocate, I started to rethink how I presented myself to the world outside of multiple sclerosis, specifically in research advocacy. What is an advocate, and what does one do? Are there different types of advocates with different standards and expectations? I knew that I would probably shed the warrior title at some point. I did not know if what I was doing had a title of some sort that came with instructions. All the better if a wardrobe assignment came with it. I did know that I cared.

What would a ribbon do?

I have been told that wearing an orange ribbon would give me the opportunity to start a discussion about multiple sclerosis. People are naturally curious and have a tendency to ask about things like graphic buttons, ribbons, or slogan clothing. The couple of times that I wore a ribbon, no such thing happened. Even at a busy airport with a layover, no one person made even as much a glace as my ribbon. Not even a person who happened to have MS asked about or noticed the ribbon. My super limited trials are clearly not valid research, but they were enough to convince me for a long time to move on from the subject. I was not a "ribbon person," so, whatever.

I have started moving into my next experience as an advocate. I am getting a better feel for my "lane" and for the areas of expertise I want to pursue. I am also learning more about the MS work I am best at and in which I can achieve the most good. It has been a fun process and one that has led me down unexpected paths and to work I enjoy. It is in within this framework that I wanted to revisit the whole ribbon-wearing idea. Is that going to be a part of where I am going? Maybe a different frame of mind could result in actual interactions. Maybe I could effectuate a difference in a new way with people who are not yet aware of multiple sclerosis.

Asking the community

This is where my people come in. I have decided that I do not have enough information to make an informed choice. I only know what has been rattling around my noggin for a couple of years, months, and days. I know it is unfair for me to make a judgment with so little knowledge based on my limited experience.

I also know that wearing a ribbon is not for me alone. It is more than a piece of fashion jewelry. A lot of responsibility comes along with it - are there things I am not considering? What might I not be prepared for? Am I making a big deal out of wearing something that does good for people living with MS? Is it just as simple as wearing or not wearing?

What do you think? What has been your experience? I would like to know so that I can be better informed on this choice. Share your thoughts, please!

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