The Fear of Disease Progression

WebMD

06-05-2025

Every day with myasthenia gravis (MG) is a new challenge. Like trying to balance on an uneven surface where you're never sure you'll stay upright.
On any given day, I manage muscle weakness, fatigue, and symptoms that can change without notice. But one of the hardest things to deal with is the fear of what could come next.
With MG being an unpredictable, progressive condition, the idea of symptom progression is a constant concern for me.
The fear of worsening symptoms is something most of us living with MG face. It's not just about the immediate impact, like feeling weaker or having more difficulty with everyday tasks. It's what might be ahead.
How will I cope if things get worse? Will I lose more mobility? Will I eventually need more support or assistance than I do now? These fears linger in the back of my mind. Some days, they feel all-consuming. It's like your body's a mystery novel, and the plot twists aren't the fun kind.
This fear often manifests in practical, everyday situations. For example, I can't help but feel anxious about going out on my own. The thought of being in public, away from home, and suddenly having my symptoms flare up is terrifying.
Will I be able to make it through the day without needing to rest? What if I can't find somewhere to sit or take a break when I need to? The unpredictability of my condition makes it hard to feel truly independent.
It's a constant balancing act between wanting to live life and fearing that my symptoms will betray me at the worst possible moment.
Adding to this fear are online forums where people with MG share their experiences. Many are in wheelchairs or using walking aids. Some have lost their ability to perform basic tasks.
While reading these stories is eye-opening, it's incredibly scary. It reminds me just how severe this condition can get, and that fear often looms over me, especially during flare-ups. Seeing others struggle with progression can make my future feel uncertain and daunting.
At the same time, there are other stories that offer me hope. I've spoken to people who've lived with MG for years and manage to lead incredibly active lives. Some have gone skiing or completed marathons, with their symptoms barely affecting them anymore. Others have found ways to balance stress and manage their symptoms so effectively, they're now in remission.
These stories remind me there's a wide range of experiences with MG. And, while things can get worse, they can also stabilize or improve. It's a bittersweet realization. On one hand, I'm afraid of the worst. But on the other hand, I'm encouraged by the possibility of living a more manageable, even fulfilling life.
But it's not just about everyday activities. As I think about my future, there are bigger, life-changing questions I can't help but worry about.
The idea of having children and juggling the demands of raising a family with a condition like MG can be overwhelming. Will I have the energy to care for a child? Will my symptoms make it harder to keep up with the physical demands of motherhood? These are the kinds of thoughts that keep me up at night.
And it's not just about me. Finding a partner who's hands-on and can share the load is essential. I need someone who'll step in when I'm too tired to chase after a toddler, or who can help when my fatigue makes getting out of bed feel like a marathon.
The uncertainty of how my own health will evolve makes this decision complicated. I also know that many women with MG have successfully become mothers. So I remind myself that it's possible, even if it requires extra planning.
Managing the fear of progression has required me to focus on what I can control. I've found that learning as much as I can about my condition helps me feel more empowered. I track my symptoms, writing down what I experience each day, and noting any changes in my energy levels, muscle strength, or other factors. By doing this, I can spot patterns and identify triggers. It gives me something tangible to focus on when things start to feel out of control. It's not about predicting the future. It's about tracking my own personal experience with MG.
I've had to shift my mindset when it comes to my fears. Instead of imagining the worst-case scenario, I remind myself I'm already living with MG. Yes, there are days when it feels like I'm barely keeping it together. But there are also days when I'm doing better than I expected.
I'm stronger than I give myself credit for. I've faced challenges I never thought I'd get through. Living with MG is tough, but it's not insurmountable.
One of the biggest lessons I've learned is to give myself permission to feel anxious or scared without letting those feelings define me. It's OK to be afraid of what might happen, but I don't have to let that fear control my life. I've learned to celebrate the small victories, like getting out of bed in the morning, completing a task without needing to rest, and enjoying a day without major symptoms.
These might seem like little things to others, but they're huge accomplishments when you're living with a condition like MG.
It's important to acknowledge that my fears are valid. It's natural to worry about what my future holds. But instead of allowing that fear to take over, I try to focus on the present moment. What can I do today to take care of myself? How can I make sure I'm as healthy and supported as possible right now? By focusing on the present, my fears about the future become more manageable.
I remind myself that the support system I've built is invaluable. Whether it's friends, family, or my health care team, I'm not alone. I've learned that asking for help isn't a sign of weakness, it's a sign of strength.
Acknowledging when I need support – whether physical, emotional, or practical – is key in managing my fear of symptom progression. I'm not in this alone, and there's no shame in leaning on others when I need to.
Living with MG comes with uncertainty. There'll always be days I'm overwhelmed by fear. But over time, I've learned to meet that fear with patience, self-compassion, and a willingness to adapt.
I might not be able to predict the future, but I can take steps to make sure I'm doing the best I can at this moment. And that's enough.
If you're also fearful of progression, be kind to yourself. It's OK to feel scared, but don't let that fear control your life. You're stronger than you know, and you can face what comes next, one day at a time. If that means having a cup of tea and hiding under a blanket for a bit, I'd say that's a completely valid coping strategy too.