Myasthenia gravis: dealing with psychological challenges

By Anita Chatigny, PhD, as recounted by Hallie Levine

If you’ve been diagnosed with myasthenia gravis (MG), studies have shown that you’re at higher risk of developing depression. That’s not surprising. MG is a disease that causes symptoms such as muscle weakness, drooping eyelids, and difficulty swallowing and breathing. All of these changes affect your ability to do everyday activities and live life the way you want to.

But there’s a lot you can do to protect your mental health. I advise my patients:

Create a partnership with your body

If you have MG and fight your symptoms, those symptoms will always win. It’s more productive to partner with your symptoms: learn what triggers them and what helps alleviate them. For example, most people I see with MG complain of exhaustion. You can’t resist this fatigue, but you can learn how best to manage its rise and fall throughout the day.

This can best be explained using the example of a private checking account. Just as you need to deposit money a few times a month to keep your account from going overdraft, you need to do the same when it comes to your energy and MG. When you wake up each morning, you have a certain amount of energy, depending on how you slept the night before, your nutritional status, and recent symptoms. You must learn how much energy you can expend before overexerting yourself. Just as you can quickly blow money in your checking account, you can use up energy that will leave you tired for the rest of the day.

I tell my patients that they can do small things every day to save energy: for example, tools like trolleys that help them with chores like setting the table so they don’t have to walk eight walks from the kitchen to the dining room. If you make these small adjustments every day, you will have more energy reserves. The result? You will feel less tired and in a better mood. It is also very powerful because it puts you back in control: you are the manager of your own energy supply and not a victim of fatigue.

It also helps recalibrate your mindset. So often people assume that a worsening of their symptoms means their MG is getting worse and panic. That is not necessarily the case. When a person without MG runs a marathon, even if they have no other underlying health problems, they are exhausted and take days, sometimes even weeks, to recover. It’s exactly the same concept with MG. If you’re feeling tired or your muscle weakness seems particularly pronounced, you may have just overdone it. Your body is telling you it’s time to take a step back. Listen to it.

Be your own best advocate

Sometimes people with MG feel guilty about their illness and worry that they are causing trouble for their family. When they have to excuse themselves from an activity because they are obliterated, they may fear that they have let down loved ones. This can cause stress and anxiety, but it shouldn’t. While it’s true that anyone who loves a person with MG is affected by their condition, they also understand that while it’s hard for them, it’s even harder for the person with the condition.

I encourage my patients with MG to speak up for themselves with friends and family members. Loved ones have good intentions, but their words of encouragement can be interpreted as words of judgment or criticism. Or they jump in and try to do everything for the person who wants to do things themselves.

Choose the strategy that works for you

Everyone affected by MG is a unique individual and therefore responds differently to mental health treatments and therapies. Some people do well with basic stress reduction techniques like deep breathing and meditation, some thrive with a few sessions of cognitive behavioral therapy, and some have more serious issues with depression and anxiety that may require prescription medication.

There is no blanket recommendation that works for everyone. I tell people I have a 3 day rule. If you feel down for a day or two, that’s okay: it can happen to anyone, even people without MG. But if it lasts more than 3 days, tell your GP or MG treatment provider. Then you need to seek more support.

Break your challenges into manageable chunks

One of the scariest aspects of an MG diagnosis can feel like you’re entering uncharted territory. MG is so rare that if you are new with the disease you can feel very alone. Support groups can help, but once you start checking out personal blogs or checking out social media forums, MG seems as insurmountable as Mount Everest.

Instead, I advise people to break into pieces the multiple challenges they face with MG. Put on your blinkers, if you will, and focus on one topic at a time with laser-sharp precision. The first hurdle to overcome is figuring out how to get the right treatment. Once that’s done you can move on to other challenges such as: B. Meeting the demands of work or taking time to take care of yourself. Otherwise, it’s like trying to climb Everest without any climbing gear. But if you have the right tools and focus on one boulder at a time, you’ll be able to meet MG’s needs on an equal footing.