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Dealing With the Uncertainty of MG

Reviewed by: HU Medical Review Board | Last reviewed: August 2020

If popular medical shows are to be believed, every health problem can be solved and treated in an hour. When you live with a complicated and rare condition like myasthenia gravis (MG), that is not reality.

First, it takes the average person with MG roughly 3 years to get a correct diagnosis. One survey found that nearly half of people with MG got at least 1 wrong diagnosis before being told they had MG.1

That is partially because, in the early stages of the disease, the symptoms may come and go and change in severity – sometimes quite quickly. This can make it hard to know which type of specialist to see. It can also make it hard for a doctor to figure out what is wrong.

Even once you are diagnosed with MG, the uncertainty continues. Symptoms can be unpredictable, and triggers may change with time. MG is famously different from person to person, so no one can tell you what your life will be like while living with myasthenia gravis. This uncertainty is common and sometimes hard to live with, but with practice, it can be managed.

Building emotional strength

Living with any chronic illness like myasthenia gravis is emotionally challenging. And, symptoms can be triggered or made worse by stress.

That is why your healthcare team will encourage you to find ways to build your emotional strength. If you feel stronger mentally, you will be better able to deal with MG’s hurdles.

As you learn to live with MG, it is important to find an approach that is realistic and positive. Yes, MG will likely mean changes in your life, and those changes may be hard to accept. However, finding a way to accept your new normal will help you find a path to enjoying what you do have.

Some common ways to deal with the uncertainty of MG symptoms include:

  • Get help for depression and anxiety quickly
  • Remember, you will have good days and bad days. Be kind to yourself.
  • Build your emotional strength with counseling, biofeedback, mindfulness training, or a gratitude journal
  • Join an MG support group
  • Try not to assume the worst. Just because a hot afternoon on the beach triggered a flare does not mean you can never go to the beach again. You may just need to go in the morning or evening when it is cooler.
  • Try not to panic if symptoms change. Take a deep breath (at least as deep as possible) and call your doctor to report the new or worsening symptoms.
  • Educate yourself about MG and take an active role in your treatment. This will give you a greater sense of control.
  • Make time to take care of yourself physically by eating well and getting enough rest. It is harder to deal with unexpected symptoms when you are tired or not feeling well.

People with MG face higher chances of developing emotional problems because they face more stress. It is important to build the self-awareness and mental tools you need to deal with the unique nature of MG.

Establishing a supportive routine

One way to combat uncertainty is to build a routine. A routine may sound boring, but it will help you focus your sometimes limited energy on the things most important to you. A routine will also help you remember to include the activities that will keep you healthier, such as eating properly, getting enough rest, and having fun.

Consider all the things you want to get done and prioritize your list. Your list might include:2

  • Rest, including daily breaks and overnight sleep
  • Daily self-care like hair care, shaving, and bathing
  • Exercise
  • Work
  • Errands and shopping
  • Household chores
  • Cooking
  • Hobbies

A daily routine will give you a sense of stability despite the uncertainty of your illness. You should build a withdrawal plan to help you handle unpredictable flares.

Be ready to throw out the routine

It can be helpful to have a routine that keeps you as healthy as possible and reduces life’s stresses. However, you need to be ready to throw out the routine when it is not working for you.

There may be days when your MG symptoms do not allow you to get as much exercise as you like or to babysit the grandkids. Remember, if you are doing your best, you are doing great.

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