Hello all in the RPV community! I want to take this opportunity to introduce myself. My name is Sarah Nesheim and I was recently onboarded with Rare Patient Voice as a Marketing intern for the next six weeks, through a program in collaboration with Rare Revolution Magazine! I have earned a master’s degree in psychology and have been working hard in the patient advocacy space for several years. Though initially I was trained to be a mental health therapist, my own personal diagnosis has now led me to a greater calling. I am extremely passionate about advocating for patients and their families. During my time with RPV, I hope to learn and grow alongside each and every one of you. My goal is to make a lasting impression within the patient and client community through my writing of personal and professional experiences. I am not one to shy away from difficult conversations; in fact, it’s when we talk about the difficult things that real change can occur.
Often in the rare disease space or with any difficult diagnosis there can be battle language present. Phrases like “let’s fight this” or “you are a warrior,” for example. We are taught or conditioned to put on a brave face to show the world. Each day we must put on this suit of shiny armor and fight to survive. Our physical bodies are in constant fight mode. However, what about when we take that armor off? We try to protect our bodies to the best of our abilities, but what about the fragile state of the mind?
May is mental health awareness month. One in five people are living with a mental health diagnosis such as anxiety or depression. Yet, the stigma still remains that mental health is not as important as physical health. In fact, if we seek out help, we are strong, not weak because none of us can do this alone. Managing a diagnosis is something none of us ever wanted or saw in our futures. There is so much to process that goes far beyond the physical features of diagnosis. Acknowledging our emotions is very different from letting them control us. We have no control over what we have been given. But, as you start to name your emotions and process them, there is freedom in that. You can slowly start to work with, not against yourself. You can learn to be kind to yourself and ask for the things that you need. Whatever emotions we feel, it is okay to feel them. The discussion of mental health should go far beyond the month of May. In the meantime, I hope we all can take a few minutes to check in with ourselves and our own mental health. Take good care of YOU.