How I Learned to Cope With My NMO Diagnosis
Last updated: February 2023
I have tried to cope with living with a long-term illness in many different ways since my diagnosis of NMOSD.
When I was first diagnosed, I had no idea what this disease was and what it entailed. As soon as I found out, I was scared that my life span after my diagnosis was 5 years because of a Google search. But in reality, I just didn't read the article properly. That can happen to a lot of people. When we aren't given enough information about our disease, we resort to Google and sometimes take in false information.
Processing my NMO diagnosis
That meant the first few weeks of processing my diagnosis were extremely difficult because I thought I would be dead soon. But, thankfully, that is something I can laugh about now.
I gave myself time to be upset and angry about how my life turned out to be. If you hold in your emotions, they can all come out at once and will be harder to deal with. I'm quite an emotional person, so it was nothing new. At first, I tried to stay strong for my parents and made jokes about my diagnosis, so they didn't see how upset I honestly was. Sometimes I feel like they took my diagnosis harder than I did.
Seeking support for NMOSD
I then went on Facebook and found groups for NMOSD and joined them. I was finally able to speak to others with my disease and could ask questions and get credible answers from them as they were going through the same thing I was. Don't get me wrong, medical professionals are knowledgeable about our disease, but people who experience the symptoms can tell you in detail, and it's more factual.
After joining these groups, I decided to make an Instagram account to build awareness of this extremely rare disease. Because of how clueless my family and I were about the disease when I was first diagnosed, I knew many people didn't know about it either. This helped me cope with my diagnosis as I could connect with many others with the same disease as me and individuals in my age range with other diseases. It made me feel like I wasn't so alone anymore or different from my peers. I didn't feel excluded; it was like my little community with each other's backs.
I came across The Sumaira Foundation and got to speak with Sumaira herself over zoom. She was sweet and the first person I got to speak to with NMOSD that wasn't over direct message or text. Because of her, I gained hope that my life wasn't ruined simply because of a diagnosis. She is thriving and living her best life while building awareness for NMOSD and MOGAD. She was my inspiration! She was also the first Asian individual with NMOSD I came across, making me feel like she was my big sister. I decided to become a TSF Ambassador for Scotland, which allowed me to talk to many individuals with my disease over Zoom and work with them to create awareness.
Having a good support system helps a lot. It shows you that people actually care about your health and well-being and are willing to stick by you through thick and thin. Having people with you can talk about your feelings comfortably, without feeling like a burden, which will help you cope with your diagnosis as you’re letting everything out instead of holding it in.
Adjusting my mindset
Staying positive played a big part in coping with my diagnosis. I repeatedly compared myself to my attack and after it so I would realize how far I've come since then. Fixating on your old life and what could have been won't get you anywhere except a dark lonely place. Instead, I took the time to teach myself how to adapt to living my new life with this illness and still make it enjoyable. Having a life-long illness isn't a death sentence!
Starting prednisolone made things harder to process because my appearance changed, and I became really self-conscious. Staying positive then made it easier to deal with. Steroids were helping me recover, which was far more important than how I looked.
Being diagnosed with a life-long illness is hard to process and takes time to come to terms with. Remember, there is always someone out there who relates to you and people who care about how you feel.
Has NMO impacted your ability to keep a job?