Myasthenia Gravis and Anxiety: 7 Tips for Coping

If anxiety starts taking up too much space in your day, there are ways to manage it. The following strategies can help you cope with uncertainty, challenge anxious thinking, and feel more in control.

1. Know Which Symptoms Warrant a Call to Your Neurologist

One challenge of living with MG is that some sensations associated with anxiety can resemble symptoms that deserve medical attention.

Shortness of breath can occur, for example, because MG has weakened the muscles involved in breathing, but people with anxiety or panic can also feel short of breath, says Richard Nowak, MD, an associate professor of neurology and the director of the Yale Myasthenia Gravis Clinic in New Haven, Connecticut.

“Prednisone, which is commonly used to treat MG, can also heighten anxiety or cause symptoms such as a racing heart in some people,” he says.

Ask your neurologist which changes to report and what you should do when certain symptoms arise, so that you have a plan before you’re in the middle of an anxious moment.

“Sometimes it’s difficult to tease out what’s due to myasthenia, what’s due to potentially a medication issue or sensitivity, and so on. We encourage our patients to contact us and not wonder, Is it my myasthenia or is it something else?” Dr. Nowak says.

2. Catch Worst-Case Thinking Early

When you’re living with MG, a change in how you feel can quickly trigger thoughts about what might happen next, especially if you’ve experienced frightening symptoms before.

The first step is noticing when your mind has jumped from what you’re experiencing now to the worst possible outcome, says Dr. Towns. “If you’re able to stop yourself in that moment and recognize that you’re catastrophizing, that’s half the battle.”

For example, if your thoughts resemble “This weakness means I’m headed for a crisis,” Towns recommends checking that thought against what you actually know to be true:

• What physical sensations am I having right now?
• Are there other things that could explain what I’m feeling?
• Have I felt this way before without the situation turning into what I feared?

“Remembering a previous time when fatigue or another symptom didn’t lead to a crisis can provide evidence against the worst-case prediction,” she says. The idea isn’t to dismiss an MG symptom but to separate what’s happening from what anxiety is predicting will happen next.

3. Practice a Calming Skill Before You Need It

Relaxation techniques can be harder to use effectively when your anxiety is already high, which is why it helps to practice them when you’re feeling relatively calm, says Towns.

“The techniques that work best are the ones you practice regularly; if you use them when you’re calm, they’ll be easier to turn to when you’re anxious,” she says.

Towns gives a few examples of a short daily practice:

• Deep or paced breathing
• Progressive muscle relaxation (an exercise in which you tense and release each muscle in your body, from your head to your toes — or vice versa — one at a time)
• Guided imagery (a visualization technique in which you imagine calming images in your mind, often with the help of an instructor, either live or recorded) or another mindfulness exercise

The most useful method may depend on how your anxiety tends to show up. Towns says that people who feel anxiety strongly in their bodies may benefit from physical relaxation strategies, while someone who spends a lot of time caught in “what if” thinking may get more benefit from cognitive behavioral strategies that help challenge those thoughts. A health psychologist or a therapist can help you find an approach that suits you.

4. Increase Your Exposure to Things That Anxiety Has Made You Avoid

Anxiety can make it tempting to stay away from places or activities that cause worry that your MG symptoms could become difficult to manage. Over time, avoiding situations can make those fears stronger.

The best way to deal with this is to stop sidestepping what scares you and face it. Put simply, “Avoidance feeds anxiety, and exposure kills anxiety,” says Towns.

The key is to start small. If a crowded place makes you anxious because you’re afraid that MG symptoms could occur and you won’t be able to leave, Towns suggests beginning somewhere familiar and manageable. “For example, sit in a coffee shop for a few minutes with a friend and use a relaxation technique if anxiety rises. You can gradually increase the amount of time you stay or try situations that feel a little more challenging,” she says.

Those experiences can build confidence because they give you a chance to discover that the outcome you fear doesn’t necessarily happen, says Towns. “Over time, this can help ease anxiety around certain situations,” she adds.

5. Build Some Predictability Into Your Day

Uncertainty is unavoidable when you live with MG, so having a few parts of your day that feel dependable may help reduce some of the mental load.

“Predictable things are less anxiety provoking,” Towns says. A routine can simply give you a few reliable anchors and make it easier to regularly fit in things that help you feel well, such as adequate sleep, appropriate physical activity, and time with other people, she says.

Tracking symptoms can provide another kind of structure. A simple record of what was happening when your MG symptoms or anxiety increased may help reveal patterns you wouldn’t otherwise notice, says Nowak.

If uncertainty about MG itself is causing a lot of anxiety, staying in close contact with your care team may also help, he says. “More frequent check-ins can provide reassurance that things are going well and we’re on top of everything,” says Nowak.

6. Find Support That Helps You Feel Less Alone

Talking with other people who understand what it’s like to live with MG can make worries about symptoms and the future feel less isolating.

Support groups can be very helpful, in part because they can normalize experiences that might otherwise make you wonder whether you’re the only one feeling that way, says Towns.

Choose your sources of support (particularly on social media) carefully, though. Towns cautions that unmoderated groups can sometimes spread misinformation or reinforce fears. Organizations like the Myasthenia Gravis Foundation of America and Myasthenia Gravis Association offer virtual and in-person support groups, while local healthcare systems may offer more general chronic- or autoimmune-illness-focused support as well.

“If someone recommends a supplement, treatment, or other health strategy, check with your healthcare team before trying it,” she says.

7. Get Help if Anxiety Starts Limiting Your Life

Anxiety that keeps you at home, causes you to routinely skip social events you once enjoyed, or keeps you from fulfilling responsibilities at work should be discussed with your healthcare team. “Once the avoidance is significant enough that it’s interfering with your ability to function, then it’s time to talk to a professional,” Towns says.

A psychologist or other mental health professional — ideally someone experienced in chronic illness — can help you develop strategies for the situations and fears that are causing you the most difficulty.

It may also help to remember that having MG doesn’t mean you should expect your health to continually decline, says Nowak. “This is a treatable condition. Working closely with your neurologist is key,” he says.