Life After My NMO Diagnosis
Last updated: October 2022
Since being diagnosed with NMOSD, I feel like a completely different person. My outlook on life has changed.
Health wasn't something I took seriously. My focus on life was just like any other person in their late teens. My life consisted of studying, going out, meeting friends, dressing up, and eating whatever I wanted, without thinking of the consequences. I was a social person, easy to get along with. I loved my job, I worked with kids in a soft play area. I volunteered for multiple charities and helped plan events. I was always on top of my college work. My favorite hobby was makeup, I was always told I was talented in that area. There would not be an opportunity that I would not take to get ready and dressed up.
How NMOSD changed my life
When I had my attack, I was bedridden for weeks. It took a toll on me. Physically, I was in the worst condition I had ever been in. I couldn’t function. My hair was always in a bun, I always wore baggy clothes because when anything touched me, it would trigger an attack, I hadn't had my eyebrows done in weeks. I just wasn't me. I had lost all hope of getting better.
Mentally, I had so much anger and sadness building up inside me. I kept thinking about why God had picked me to suffer at such a young age. I had a whole life ahead of me, I wanted to learn how to drive, graduate and get a good job. That kept circling in my mind 24/7, every day I would wake up angrier. My hopes and dreams had shattered right before my eyes. My dad thought by giving me tough love would make me stronger, but it didn't. Everyone handles things differently. But it made me feel weak, a man who has been through much more than me is still hopeful about life, yet I've given up. I felt like I was always going to be bitter after this.
Shifting my mindset
I had to cut contact with some people I was the closest to, simply due to my health and well-being. Some people I thought would be in my life forever were gone. You can't have people in your life that don't take your condition seriously. I learned the hard way.
I had tendencies to be ungrateful about the little things in life like my independence. After my attack, I am so grateful for my support system. I honestly took my parents for granted before everything happened. After I saw how strong and supportive they were when I hit rock bottom, I have so much love for them.
Life isn't always about being social and meeting new people; sometimes, it's about cherishing those around you that have stuck by you through bad times. You tend to forget how important family is simply because you're used to having them around.
What keeps me going
I've become more patient with everything. You never know what someone is going through. Someone could be smiling and laughing but, on the inside, they're broken and just trying to get through the day. I've learned to take it one day at a time. I could wake up tomorrow and be unable to function. You don't realize how important having good health is until it's taken away from you. Every time I go for a walk alone, I look around me and appreciate everything. I thank God for giving me another chance. Even if it's difficult living with NMOSD, I can walk, breathe, and do things independently. I got rid of the anger and bitterness that were taking over me. It's life, things happen, and we just have to overcome the obstacles it throws at us. If I had let sadness take over me, I would have lost the battle against NMOSD.
The Quran says, "Allah does not burden a soul beyond that it can bear." That keeps me going. I can take everything life hits me with as long as I have faith that God will be there for me. So be it if he picked me to go through this battle at such a young age. I will not let this disease win. Never give up. Life does get better. Even if it seems like it won't, there is always light at the end of the tunnel. This battle against NMOSD has made me a better person. I may not be the old Haleemah, but I am the better Haleemah.
Has NMO impacted your ability to keep a job?