As someone who has been living with a rare disease diagnosis for eight years, I often get asked this one question over and over again: “What advice would you give to someone who is newly diagnosed?” My answer to this question has varied over the years, however one thing that might be overlooked is the concept of self-care.
When you are first diagnosed, and to be honest all throughout this patient journey, we feel a range of emotions. We are quickly thrown into this new world with absolutely no clue how to survive in it. You may lose your sense of self and have no idea if you’ll ever find your way back again. Suddenly, the life that you had created for yourself and the path you chose to be on is taken from you.
To give you some personal context, I was diagnosed at 28 years old. I had just finished grad school and was ready to start my career as a mental health therapist. With one phone call my focus was no longer about creating my own life, it was about saving it. Instead of dressing up to go out on dates, I was forced into a hospital gown. Instead of signing a job offer, I was signing treatment consent forms. I was told what time to show up to appointments, what treatments to receive, what pills to take and how many times per day. I was told several things by my doctors, by nurses, by my parents and friends. Do this, do that, try this, avoid that. This was no longer my life. This was no longer me.
It took me a long time to find my voice again and learn how to use it. Seeing a therapist was my first tool that helped me process my diagnosis and slowly start to rebuild my sense of self. It’s important that we all figure out what works best for us. One size does not fit all here. My self-care routine is practicing yoga, going for walks, visiting friends, seeing my therapist, and writing, to name a few. It is so important in this busy world that we slow down and really listen to what our minds and bodies need. Do something that brings you joy. My diagnosis has helped me slow down and appreciate the little things in life, that are actually the big things. I would encourage you to find your own self-care routine that fits for you. I believe that in taking these steps, we can start to rebuild ourselves and take back the little pieces that were lost along the way. What is just one thing you can do for self-care today?
–Sarah Nesheim
