Tag: MG support

By Anita Chatigny, PhD, as told to Hallie Levine

 

If you have a diagnosis of myasthenia gravis (MG), studies show that you have a higher risk of developing depression. This isn’t surprising. MG is a disease that causes symptoms such as muscle weakness, eyelid droop, and difficulty swallowing and breathing. All of these changes affect your ability to do day-to-day activities and to live life as you want to.

But there’s plenty you can do to protect your mental health. Here’s what I advise my patients:

Create a Partnership With Your Body

If you have MG, and are in a battle against your symptoms, those symptoms will always win. It’s more productive to create a partnership with your symptoms: Learn what triggers them and what helps relieve them. Most of the people I see with MG complain of disabling fatigue, for example. They can’t fight back against this fatigue, but they can learn how to best manage its rise and fall throughout each day.

The best way to explain this is to use the example of a personal checking account. Just like you need to put money in it a couple times a month so your account doesn’t become overdrawn, you have to do the same thing 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 any recent symptom flares. You need to learn how much energy you can use before you become overextended. Just like you can quickly blow through money in your checking account, you can use up energy, leaving you fatigued the rest of the day.

I tell my patients that there are little things they can do every day to conserve energy: for example, using assistive devices like carts to help them with household chores like setting the table, so they don’t have to make eight trips from the kitchen to the dining room. If you make these small adjustments every day, you’ll have more energy reserves. The result? You’ll feel less fatigued, and you’ll be in a better mood. It also is very powerful because it puts you back into control: you’re the manager of your own energy supply, rather than a victim of fatigue.

It also helps to readjust your mindset. So many times, people assume that an aggravation of their symptoms means their MG is worsening, and they panic. That’s not necessarily the case. If a person without MG runs a marathon, they’ll be exhausted, even if they don’t have any other underlying health issues and they’ll need days, sometimes even weeks, to recover. It’s the exact same concept with MG. If you’re feeling fatigued, 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 may feel guilty about their disease and are worried that they are creating hardships for their family. If they need to excuse themselves from an activity because they’re wiped out, they may fear that they’ve let their loved ones down. This can cause stress and anxiety, but it shouldn’t. While it’s true that everyone who loves a person with MG is affected by their illness, they also understand that while it’s hard on them, it’s even harder for the person with the condition.

I encourage my patients with MG to advocate for themselves with friends and family members. Loved ones are well-intentioned, but their words of encouragement can be interpreted as words of judgment or criticism. Or they may jump in and try to do everything for the person who wants to do things themselves.

Pick the Strategy That Works for You

Everyone affected by MG is their own unique individual, and thus they’ll respond to mental health treatments and therapies differently. 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 significant issues of depression and anxiety that may require prescription medications.

There’s no blanket recommendation that will work for everyone. I tell people that I have a 3-day rule. If you feel down for a day or two, that’s fine: It can happen to anyone, even people without MG. But if it persists past 3 days, let your primary care provider or MG treatment provider know. That’s when you’ll need to seek out more support.

Break Your Challenges Into Manageable Chunks

One of the scariest aspects of an MG diagnosis may be the feeling that you’re entering into unknown territory. MG is so rare that if you’re new to the disease, you can feel very alone. Support groups can help, but if you begin to look at personal blogs or go on social media forums, MG may begin to seem as insurmountable as Mount Everest.

Instead, I advise people to break down the multiple challenges they face with MG into chunks. Put blinders on, if you will, and focus on just one issue at a time with laser-sharp precision. The first hurdle to tackle is figuring out how to get the right treatment. Once that’s done, you can move on to other challenges, such as meeting the demands of work, or carving out time to take care of yourself. Otherwise, it’s like trying to scale Everest without any climbing gear. But if you have the right tools, and focus on one chunk of mountain at a time, you’ll be able to meet the demands of MG eye to eye.