You are Always Worthy →

What I learned is that if you are trying your best then that is usually good enough. The problem isn’t you per se, but the other people. I was trying so hard that I realized I was trying way harder than other people and not getting good results. I was always supportive of people, so I would go to volleyball games to cheer them on or stay after school to help. I was always available if somebody needed help with their homework, someone to talk to, or any help they needed. When I needed their help, I experienced a lot of ghosting, and not being invited was difficult.

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My Truth

The sad thing is that I was going so far out of my way to accommodate others, that I was putting my own mental and physical health in jeopardy. This was when I began to realize something. The only person who has any say in the validity of my life experiences is me. People may be “uncomfortable” hearing about what I’m going through, but I guarantee they’d be far more “uncomfortable” actually living through it. I also realized that as an individual suffering from a rare condition, I have a unique opportunity to change the narrative and stigma surrounding this community. But the only way to do that is to stand with courage in your convictions and speak your truth. If people, in turn, choose to judge you… guess what? They are not “your” people.

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The Different Versions of Healthy

“Healthy” is not a one-size-fits-all. It has taken me years to accept that when I go into crisis I will have to do certain things that society considers “unhealthy” in order to stop long-term damage to my muscles. As the patient, it’s important to remember your worth, and trust in yourself and your care team to know what is best for you—not your co-worker who swears by intermittent fasting. I’m grateful that I have stopped trying to blend in and hide my quirks and instead welcome the questions from others, even if their approach could use a little work because that is best for me.

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