Aging with NMOSD: How I’m facing the future with hope
It's difficult to distinguish between normal aging and disease-related changes
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This week, I turned 45. It’s a number that feels both accurate and completely wrong at the same time. In my heart, I’m still the woman who loves electronic dance music and dreams of crossing the finish line at another 10K race.
But neuromyelitis optica spectrum disorder (NMOSD) has a way of adding years that don’t show up on a driver’s license. It appears in the moments when I can’t find the word I’m looking for, when my memory lets me down, or when a 9 p.m. bedtime sounds more exciting than a night out. Living with NMOSD has taught me that age isn’t just about the years you’ve lived. Sometimes it’s about everything your body has endured along the way.
NMOSD has forced me to get comfortable with the uncomfortable, and to live with uncertainty. From the moment of diagnosis there are questions that never fully disappear. Will I have another attack? How much disability could I face? Will treatments continue to work?
As I get older, a new set of concerns has begun to emerge. The challenges of aging with NMOSD are different from the challenges of simply living with the disease. They force me to think about the future in ways that many people without a chronic illness may never have to consider.
One of the hardest realities is the awareness of my own mortality. Everyone ages, and everyone eventually faces health challenges, but living with a rare autoimmune disorder adds another layer of uncertainty. I sometimes wonder if NMOSD has shortened my life expectancy. I wonder whether years of inflammation, treatments, and physical stress have placed additional strain on my body. While no one can predict the future, it is difficult not to think about whether my health journey will look different than that of my peers.
Distinguishing between disease and age
Aging also brings the possibility of developing other conditions. Many people eventually face illnesses such as heart disease, arthritis, osteoporosis, diabetes, or cancer. For someone already managing NMOSD, those possibilities can feel overwhelming. I often find myself asking questions that others may never need to ask, such as: How much more can my body handle? What happens if I develop another serious disease? How would my immune system respond? Would treatments for one condition make another condition worse?
These worries aren’t just theoretical. Living with NMOSD requires constant management of medications, medical appointments, symptoms, and fatigue. Adding another diagnosis into the mix could create complications that are difficult to anticipate. I sometimes fear that I’m already using my body’s reserves just to maintain my current level of health. The thought of facing another major health challenge can be frightening.
There is also the reality that aging naturally affects strength, mobility, balance, and energy levels. For someone with NMOSD, it can be difficult to distinguish between normal aging and disease-related changes. I can never tell if the weakness I feel is simply part of getting older or something more. I can also never tell if my increased fatigue is due to age, NMOSD, or both. These questions don’t always have clear answers, and that uncertainty can be frustrating.
Another challenge is the emotional burden of living with a disease that requires constant vigilance. NMOSD is never completely behind me, even during periods when I feel well. Any new symptom, whether it’s numbness, weakness, vision changes, or unexplained pain, can raise concerns about a possible relapse.
As I age, that uncertainty becomes even more complicated. It can be difficult to distinguish between the normal aches and pains of getting older and symptoms that may be related to NMOSD. What others might dismiss as a sign of aging can prompt questions and worry for someone living with a chronic illness. Carrying that uncertainty year after year creates a quiet emotional weight and a sense that the disease is always present, even in its absence.
Yet despite these fears and uncertainties, I find reasons for hope.
When I look back at the years since my diagnosis, the progress has been remarkable. Not long ago, there were few treatments specifically designed for NMOSD. Today, there are therapies that target the disease, reducing relapses and helping people maintain their quality of life. Researchers understand far more about NMOSD than they once did, and that knowledge continues to grow.
The advances I’ve witnessed remind me that the future isn’t fixed. The questions and concerns I have about aging are real, but so is the progress being made by scientists, physicians, and researchers around the world. Every year brings a better understanding of NMOSD and new possibilities for treatment.
While I cannot know exactly what the future holds, I choose to focus on what I’ve already seen. I’ve watched medical science transform the outlook for people living with NMOSD. Because of that progress, I remain hopeful that even greater breakthroughs are still to come. Perhaps there will be more effective treatments, better ways to prevent damage, or even a cure. For the first time in my life with NMOSD, that possibility feels real, and I’m hopeful that I might see it happen in my lifetime.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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