I wrote this blog post after my first year of being diagnosed with a rare disease. These are my reflections about having a rare disease.
It’s the last day of the rarest month of the year: February is the only month that has less than 30 days. My Google calendar tells me it’s rare disease day. It’s likely you didn’t know about rare disease day because there aren’t many people in the world who have rare diseases!
I wasn’t going to post anything today and then I was thinking about how it is a unique experience to have a rare disease. I didn’t know ANYTHING about rare diseases until getting one myself. I wonder if I blundered conversations with people in the past because I didn’t know much about what it is like to have a rare disease?
Now that I am “in the club” and learning what life is like with a rare disease, I feel humbled. I am learning so much. If I share what it’s like, maybe you’ll have a bit of insight if you ever encounter someone with a rare disease. Maybe by sharing what I have learned, you can have more connection with people in your life who live with rare disease? (This bit of wisdom is something I learned from Susie Schwartz of www.lesshealthstress.com )
So what does it mean to have a rare disease? I’m still learning this myself to be honest. Here is what I’ve noticed so far.
1. It can feel lonely. Any disease can feel lonely, especially in a culture that is youth oriented and not so great at grieving or hearing pain or going slow or accommodating differences. In this year since I’ve had a diagnosis, sometimes I’ve wondered if a rare disease feels a little bit lonelier? People who have been touched by cancer or diseases that are more well known seem to have more support and recognition and understanding. It’s trickier to relate to rare diseases. (People with multiple layers of diseases probably also know what I’m talking about.) I did the Terry Fox run this fall and saw people with cancer and their families uniting in their shared experiences with the disease and I felt a pang of my own sadness. How can I say that, right? I do not wish for cancer but I do find myself wishing for a community with shared experiences.
2. I wonder if the anxiety is different? Every person’s experience with disease is different but rare diseases don’t have the same data or treatment options or experienced health care providers as more common diseases do. I feel so grateful to live in a place where I have access to such a thorough, supportive medical team and even still, I’m learning that living with anxiety and ambiguity will become my new norm.
3. We’re walking guinea pigs. I kind of like this part of having a rare disease because I appreciate science. I have consented to every tissue and bodily fluid sample asked of me so that scientists can learn more about my disease and lungs and immune systems in general. As a walking anomaly, I present a unique case study. In this small way, I feel like I can contribute to the world. And it feels nice to contribute.
My experience of getting this disease was highly unusual because of COVID. I’m doing really well right now and I don’t think my future experiences with this disease will be as scary as my first experiences leading to my initial diagnosis and treatment. I am so grateful for that.
I also feel gratitude for the people who are a few steps ahead of me on this path. As I have scrambled to learn what to do or how to grieve, their guidance has made this experience easier.
I’m also grateful for you. Thanks for joining me as I figure this all out. Thank you for getting curious and joining me in my vulnerability.
