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How Support Groups Help My Life with Devic’s Disease

On the night before Thanksgiving in 2019, I went to sleep feeling relieved that the sight in my right eye had returned; I had lost it months before. However the next morning, I found myself painfully blinded in my left eye, as a result of another Devic’s disease attack. Most Thanksgivings, I’m grateful for family and friends. But this time? I treasured seeing them, since the sight in my right eye came back just in time.

Devic’s disease is a neurological disease of the brain and spinal cord, dominated by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). It is also called neuromyelitis optica spectrum disorder or NMOSD. I live with a relapsing form of the disease, which means I can experience multiple attacks that can accumulate over time. Attacks can result in inflammation and damage to the nerve fibers, which can disrupt nerve cell communication. People who live with Devic’s can experience blindness, paralysis and other serious complications. 

That sums up what living with a rare disease can feel like: unpredictable, like “normalcy” is slipping away. So I tiptoe around my life like everything is made of china, terrified that at any moment my disease might make things worse.

Every morning is a surprise. I don’t know what to expect on a daily basis. People may not know if their partner or loved one will be the last thing they’ll see, or if forms of paralysis will manifest. But most of all, it’s impossible to understand what living with Devic’s disease is like, which can make it feel extra lonely sometimes.

I was in the first month of my diagnosis when I found online support groups. I shared my story with complete strangers; they could have just offered unsolicited advice. Instead I ended up getting an ample amount of support and positive encouragement. Some were diagnosed around the same time as me, are half-blind like me, have lost their ability to walk or are in the hospital fighting for their lives. I felt seen and like I was a part of something special. We all walk our own path, but sharing similar experiences and relating to others in the rare disease community makes the journey richer and more comforting. We have the opportunity to spread love, support, faith and contagious joy in the midst of something that can be so challenging and life-changing.

The online support groups have become nothing short of family. We celebrate milestones together and post silly photos during infusion days. We sometimes call each other or attend video group chats too. We wish each other happy birthdays, and we mourn the loss of fellow community members together.

Online communities are a reminder that the person we were before being diagnosed is the same person we always have been. The only difference is that we get to use all the vitality of endless uncertainty, angst and sorrow to continue sharing our journeys with others, all in the hopes to spread inspiration. Whether through a photograph, poem, prayer, piece of music, social media post or article, the entire group appreciates the means to share bits and pieces of where we’re at in our respective journeys in the hopes of building each other up.

Anyone can build a community, but what makes a community great is its ability to create a circle of vulnerability and realness for people living with rare diseases. Feeling heard makes me want to be a part of it. Along with my faith in the good Lord and how much he has seen me through, I found a community that is filled with raw expression and supportive communication, which leads to togetherness and belonging. Both have given me hope that I’m never fighting alone and that I can still do things I’m passionate about. 

Alone we are rare, together we are strong.