By: Anna Laurent
My rare disease journey is my mental health journey. The largest impact on my mental health, however, has been survivor's guilt.
I used to despise every aspect of my disease and anything associated with it, including myself. Luckily I've gone through a hard and rewarding journey of acceptance and I don't mean acceptance of the condition. It's been a journey of accepting that my feelings will change day-to-day and obstacle-to-obstacle, and that's okay.
I have Alagille Syndrome (ALGS), a condition that can affect multiple organs ranging in severity. Because of ALGS, I deal with a lot of fatigue due to pruritus (chronic itch). I describe it like that sensation you get where one spot on your nose itches and it's so satisfying when you scratch it, except for me that sensation is all over my body, all the time, and scratching it doesn't make it go away. I spend a majority of my energy each day controlling my itch, then more energy scratching, even when I'm sleeping. High stress increases my pruritus, so there are times I get in a vicious cycle of scratching so much in my sleep that I wake up physically exhausted and sore.
It's taken me a long time to accept that part of my rare disease journey is my mental health journey. They are incredibly intertwined and have been a rollercoaster ride. There have been times where having ALGS, depression, and anxiety have created the perfect storm for feeding my insecurities. I've felt like a burden, unworthy, unlovable, and guilty.
The largest impact on my mental health, however, has been survivor's guilt. There are many with ALGS who don't survive infancy or childhood and here I am, a relatively healthy young adult. The survivor's guilt became more and more difficult as I became more active in the ALGS community. I was meeting so many families impacted by the condition, which meant knowing when more and more families suffered a loss. It felt like a cruel joke at times. It felt especially cruel when it was a family that told me I brought them hope. I brought them hope of the future their child could have and then they lost their little one....the guilt can be overwhelming.
Aside from therapy, one thing that has worked for me in overcoming survivor’s guilt is examining the "why" behind my decisions or actions. I used to let the guilt drive my decisions. I've worked hard to identify my core values and challenge myself to keep those in the forefront of everything I do. I also strive to be transparent that I in no way have it all figured out and never will- I'm always learning and growing. I now know that I can't use any strategy that involves comparison- even if meant in a positive way. Comparison feeds my anxiety and sends me down in a tailspin. In my opinion, life is too short for comparison.
The feelings I have for ALGS can range from amusement and grief to anger and sentimentality. My experiences with ALGS have shaped such a powerful and tender part of who I am at my core; I think that's where my sentimentality comes from. There are so many beautiful parts of my life that ALGS has brought me. If you had told middle-school Anna this, however, she would fake laugh and pretend like she believed it.
Anna Laurent is the Head of Programs and Initiatives at Our Odyssey, an organization that connects young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.