Growing up required me to take more initiative when it comes to my own life. Having spinal muscular atrophy (SMA) may complicate some decisions, but I’ve learned to advocate for myself and never lost sight of my self-control.

Start Simple

Before anyone else could take me seriously, I had to learn how to be vocal with my thoughts and to communicate them effectively. Self-advocacy is one of the best skills I’ve developed. Living with SMA means that I need to communicate information about myself with people on a daily basis.

Asking someone to turn on a television may not be a big deal, but being vocal could make the difference in what I end up watching. Feeling confident enough to go the extra mile of asking for a simple channel change could be a great beginning for someone who is new to self-advocacy.

Nothing To Fear

I have no clue if this is an issue for other people, but I first had to break through a barrier of fear. Even if I genuinely had no other option than to ask for help, I still felt a sense of being a bother to people when I had to talk about my needs.

To some degree, the feeling still lingers today, but I learned to manage it with a little mental reconstruction. Focusing on what’s realistic helped me overcome some of the stress. Saying to myself, “What is the worst that could happen?” automatically puts perspective on the situation. If people seem to have a problem with doing a simple task, that is not at all my fault.

Bravery Helps Universally

Applying the same logic to different scenarios is a major help for my future goals. During high school, I learned how to take on responsibility and make things happen while working around SMA. If a particular task required a quick elevator ride, I once would have waited for someone to offer help. Confidence eventually enabled me to be brave enough to pull someone aside and just ask for help.

Self-Advocacy In Medical Settings

Medical professionals are always happy to speak directly to their patients. Being able to tell my health care providers if I have a problem helps because I can vocalize the exact details better than anyone else could. If a medical professional has a suggestion to try something new, it is beneficial for me to discuss it with them directly. I’ve learned to speak with strength and personality to communicate in medical settings. Believe it or not, a louder voice and detailed explanations guided me to the place I am now.

Practice Makes Perfect

Opportunities to practice self-advocacy can arise naturally in school or in passionate conversations with friends and family. I have a lot of people in my life who are willing to peacefully debate without ill feelings afterward. Finding my passions and getting excited about them was a great way to find my voice.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.