Setting Realistic Goals and Expectations With MG

Many of my friends, colleagues, and family members set goals for the year in January. Goals can be personal or professional, interpersonal or financial, realistic or not.

What makes a goal realistic, particularly for someone with myasthenia gravis (MG)? It’s a tough question to answer, but I’ll do my best.

Before I got sick, I was one of those people who saw every Jan. 1 as a new beginning. I could mentally reset the clock and plan to make the new year the best one yet.

I’d spend days filling a vision board with my goals and dreams. Then, I’d break down specific, actionable steps I could take to make those goals and dreams a reality.

My health intervenes

After I had to medically retire from the Army in 2011, I spent seven years focused on working with the doctors at my local Veteran Affairs (VA) facility to figure out what was wrong with my health. Unlike my previous goals, this objective had no official start or end date, timeline, or deadline. I simply worked at it a little bit every day.

In 2016, I started following business consultant and growth coach Lisa Robbin Young’s example of setting “DUMB” (doable, understandable, meaningful, believable) goals, which she describes in her book “Creative Freedom.” Young’s system helped me to set better goals related to obtaining a diagnosis, and to partake in hobbies that made me feel better during this weird limbo period.

I finally achieved my goal and was diagnosed with MG in July 2018. After starting treatment, my symptom progression seemed to plateau, and I felt better than I had in years.

A change in perspective

Fast-forward to 2020, when my husband became a personal trainer, and I got to hear a different perspective on goal setting. Over the next 18 months, I learned about realistic goals, unrealistic expectations, and how to find a compromise between the two. This lesson was drilled into my head quietly, subliminally, without my husband or I realizing it was happening.

My husband helped me get out of my own way. Listening to him explain how he was helping his clients set and achieve realistic goals showed me I had very unrealistic expectations about what my body could and couldn’t do.

This lesson ultimately proved helpful when my symptoms began to break through the treatment in July 2021. My health tanked, but I was still trying to live like I was “fine.”

I wasn’t. I ended up having my first myasthenic crisis, and was in the specialty care unit at my local VA for a week in respiratory failure.

Setting my expectations for 2022

After last year, I know I must accept that I’m not “fine.” As I look ahead to 2022, I’m determining which expectations are realistic, which will allow me to set achievable goals.

Unrealistic expectation:

• I can do the same things I’ve always done, in the same way I’ve always done them.

Realistic expectations:

• I can do many of the same activities that I used to do, just altered or in moderation.
• I will require rest or break periods between activities.
• My abilities will change as my care team and I work to find a better treatment plan for me.
• My baseline will likely be different from my baseline two years ago, when my symptoms were well managed.

If MG has taught me anything, it’s that I can still do many of the things I enjoy, but I have to be patient and kind to myself in the process. I must show myself grace, and accept that I’ll need to perform activities differently.

Because of the disease’s variability, my main goals are to accept the pivot, ride the wave of unpredictability and inconsistency, and accept my limitations. What’s unrealistic today may be completely doable tomorrow. That’s the wonder of MG: No two days are ever alike.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.