Ask the Advocates: How Do You Explain NMO?
We asked our advocates how they explain what NMO is to the people in their lives. Here's what they had to say:
"When I was first diagnosed, I had a really hard time wrapping my head around what NMO really is. The unfortunate thing is my husband and children saw me go through the worst of this condition firsthand. Explaining this to them would be rhetorical. However, I have a BIG family and most are pretty curious (and don't forget the noisy ones) about what is going on with me. When my family would ask me, I would go on the long explanation to try to paint a picture that could describe what NMO is. After a while, that got draining. It seemed as if, no matter how I'd try to explain, they simply wouldn't get it. Therefore, I stopped."
"I had to sit back and I noticed that I was putting too much on myself, wearing myself out, all in an effort to make their lives easier. I came to realize, 'if one were truly interested, they would take the time to look into it, especially family.' I started noticing this same standpoint from other members of the NMO community as well. I decided it was time to change my tactic and take a different approach. So, when I am asked the question, 'what is NMO?', the new me will tell you, 'look it up."
"I often reference MS when I’m explaining what NMO is and how it impacts my body. Although NMO and MS are very different diseases, they are also similar in many ways. Because more people are familiar with MS, I start by explaining the similarities between both diseases, then move on and explain the differences and why it’s critical to receive an accurate diagnosis from the start."
"When I explain my symptoms and how NMO has impacted my quality of life, I make it a point to explain that most of what I am able to see or can't see appears invisible to someone who is looking at me. The same holds true for pain, spasms, and the variety of sensations that I experience daily. Nobody truly has any idea what someone else is living with. I hope to educate those who are interested in learning more about NMO, but more than anything, I hope to challenge the idea of what being 'disabled' looks like and help move the needle towards a kinder, more inclusive experience for all."
"When explaining NMO to people who have never heard of the disease (which is everyone in my family and most people that I meet), the easiest way to explain it is that it's a more progressive case of MS. Most people already know what MS is, so to say 'a more progressive case' sets the tone."
"I then describe the most severe symptoms, and how for most people it is either one extreme or the other (with the vision loss or paralysis), and then there are the rare unfortunate few who may experience both. If they want to know more, I tell them about some of the less severe symptoms, like the hiccups or nausea and vomiting that come out of nowhere. In describing what NMO is, I normally try to focus on describing how I feel. I explain how I’m always tired but I try to hide it as much as I can. I tell them that I'm always in pain, but the type of day I will have depends on how bad the pain is. I ask for grace and patience because I need it, and I let them know that I sometimes wake up fearful because I’m unsure of what the day will bring."
How do you explain NMO to the people in your life?
Do you feel guilty when you need to rest?