I’ve oft said that giving a child an unusual name could be beneficial as, at least in my case, it gave me permission to advocate for myself from an early age. How many times can a 5- or 6-year-old stand up to an adult and tell them that they are wrong (in their pronunciation of their name)? It’s an empowerment that can stick with them for life. RELATED: Best of Tippi MS: How to Be Your Own Health Advocate
A Young Seaman Instructs an Admiral
I found this to be the case when I was a seaman apprentice (SA, E-2, the second-lowest rank of the enlisted military) in the Coast Guard. During a Drum and Bugle Corps International (DCI) performance at the U.S. Coast Guard Festival, I was asked to explain the competition to the Commandant of the Coast Guard (Admiral, O-10, the highest-ranking officer in the service). I had been the drum major of a nationally ranked competitive marching band in high school and knew DCI rules pretty well. Let’s just say that not a lot of SAs had opportunity or cause to “explain” things to an admiral. I’d like to think that part of my confidence in doing so may have been seeded in my early defenses of my unique moniker.
The Person With MS Must Inform Any Care Decisions
Now that I live with multiple sclerosis (MS), I see how important self-advocacy and being confident and comfortable standing up for myself has become. It can be far too easy to simply do what we are told by doctors, nurses, other healthcare workers, family, and even what I call the MS know-it-alls who populate the world. Please don’t misinterpret. We need to take the considered medical advice of professionals into account as we make our health decisions. At the end of the day, however, they are our decisions to make. A good relationship with your medical team can help turn “My doctor put me on …” to “We decided the best treatment would be …” RELATED: Multiple Sclerosis Resources
We All Win When We Collaborate
I’m a firm believer in collaborative problem-solving — be it in the home, workplace, or doctor’s office. We put together the team, we are part of the team, but we are also player-manager of the team. As when I sat next to the admiral in the stands and told him things that I knew and that he did not, a healthy dose of respect is part of conversations like these, but deference needn’t be. These are our bodies, it is a disease with which we are living, and the final decisions — though collaborative in their best origins — are ours to make. RELATED: Shared Decision-Making for MS Treatment
The Effects of MS Make Self-Advocacy That Much More Necessary
It is all too easy to allow ourselves to feel diminished by our shared disease. Fatigue can leave us lacking the energy to do just about anything. Cognitive fog (cog-fog) can have us second-guessing whether or not we’ve even had a first guess at it. And physical limitations can take us so far out of the game that we wonder if we’re even in the stadium. MS can shake our confidence in just about every aspect of our lives. That is why it is of such importance to learn to advocate for ourselves. Simply because it would be so easy not to … and that’s not who we are. No matter our name. Wishing you and your family the best of health. Cheers, Trevis
