My Mental Health and Journey with NMO
From the beginning of my NMO diagnosis until now, I’ve recorded every major portion of my rare disease health journey - from the doctors telling me I have an NMOSD to the doctors saying that my G.I. system was failing - to now.
How I started documenting NMO, my rare disease
I started recording how I was feeling at home because sometimes I had to find a way to get my emotions out. I had a lot of friends that didn’t understand me at that time, so I really felt like I was alone.
The video diaries help me express my feelings. This is a bit of a different experience than riding them out because my emotions were raw and real. No one wants to turn the camera on when they’re crying, but it helped me look back to see the real emotion of what I was going through at that time.
The corniest thing I thought I ever heard was that in trauma, your diary is your best friend. That's until words became my superpower.
There’s no limit to how or what you can write. I even started doing journal entries on my phone so that I could keep everything in one place. You don’t necessarily have to read the entries you write again. It’s the act of getting the thoughts to paper.
Using social media to share my NMO story
I couldn’t encourage people to utilize social media to share their stories enough! I found so much mental relief when I saw that other people were going through the same things as me. The majority of people I call my best friends and family are all people with rare diseases that I found online.
My NMO page and my personal page are separate expressions
Making a page specifically and only for your health issues is a good way to separate that from your other personal page. I started uploading some diary and video entries to Instagram. To this day, I still get messages from people asking me to walk them through certain parts of my journey. I’m glad I have social media as a place to put all of my random thoughts and words.
Finding NMO and rare disease support groups
Support groups can be awkward sometimes, especially in-person ones for me. But thankfully, we live in the age of technology, so we have virtual support group sessions.
Connecting with peers in my age group
I’ve always felt better after a support group session, especially with people around my age. Much of the time, we're thrown into support groups with people with the same disease. But we also have to remember, every year we grow older, we’re in another chapter of life. It wouldn’t make sense to me to group a bunch of differently-aged people in one group.
I found the most success with the support groups of people that were within my age range because we can connect on earth the things in our life that our disease affect, that probably won't affect somebody who is older.
Being a rare disease advocate for NMO
When I started sharing my story, I had no idea what advocacy really meant. I saw the issues I went through and the issues my friends went through. So, I became an advocate online.
I would do anything I could that meant more awareness for NMOSD: submitting articles to the news, making posts on my page about the disease and its effects, and partnering with some of the rare disease pharmaceutical companies to share my story while future drugs are being developed.
My mental health became a lot clearer when I realized I had a purpose in sharing my story and traveling to see other NMO or rare disease patients.
Starting my NMO nonprofit, Couch Pennies
Sharing my story is good for me!
There were days I couldn’t get out of bed due to the pain. There were also days were mentally I felt a lot worse than I did physically. But having something positive to put your energy into can really be beneficial to your mental and physical health.
Were you misdiagnosed, prior to being diagnosed with NMOSD?