Preparing for a rare disease
I might not be actively living with a rare disease, but I am preparing for the day I might begin showing symptoms for Huntington’s Disease (HD). At the age of 20, I decided to go through genetic testing to find out whether or not I would carry the same gene expansion that took my mom’s life after 17 years. I tested positive which means that I am guaranteed to develop symptoms and slowly deteriorate both physically and mentally, just like my mom. Unless there is an effective treatment (or do I dare say cure?), my friends and family will watch as I lose the ability to do anything on my own.
You might be thinking that I am “perfectly fine” right now, but that certainly isn’t the case. I might look fine, but mentally I am not because I saw my mom slowly get worse over time and there was nothing I could do about it. Imagine seeing your loved one battle a disease where over 10-20 years you see them lose their ability to walk, have trouble eating, develop a lack of motivation, have mood swings (including random outbursts), experience memory loss and more. Being a young adult impacted by HD isn’t easy, just take a look at this video to better understand how HD mentally impacts young people.
Call me crazy, but COVID-19 has been a blessing in disguise for me. It has allowed me to self-reflect and remind myself to live in the moment rather than speed up time as a response to the threat of to one day showing symptoms of HD. Here is what else I learned:
It’s okay to not be okay. All of my life I have tried being the “strong one” because I felt like it was my responsibility to be there for everyone else; except for myself. I would do my best to keep my emotions inside which resulted in days where I would struggle mentally. I am finally at a point in my life where I have to be able to take care of myself before I try taking care of others.
Take time for self-care each day. For me, that means getting out of my apartment each day to go on a walk or run, catch up with friends by phone or through video games, and listen to my soothing music.
Reach out for help when you need it. During the pandemic, I switched anxiety medications which caused withdrawal symptoms (a story for another time). There were days where I felt completely out of it or depressed. Luckily I have an amazing support system of friends and family who helped me along the way and have been there for me during the good and bad days.
Don’t be afraid to find professional support. Throughout COVID-19 I have been going to therapy (virtually) and it has been a lifesaver. I know my friends and family can only do so much to help me out and that I need to talk to a professional about some of my struggles (read my previous blog post about affordable mental health resources).
Social media is both a friend and an enemy. I love social media because it allows me to stay connected with friends and colleagues while also staying up to date with the news, sports, and health space. But I have also seen how it has divided the country, especially when talking about COVID-19 or police brutality. I’ve learned that I can only do what’s in my control and to put my energy into positive people and ideas that align with my values.
Although I don’t “have” a rare disease just yet, I do understand the challenges ahead of me as I prepare for life with one. But until then, I am going to continue fighting back and having my voice heard in drug development because the patient voice is (and always will be) part of the recipe in finding an effective treatment for any rare disease.
