Answering the Invitation to Simply ‘Be’

Rebekah Dorr avatar

by Rebekah Dorr |

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Having a rare disease opens the door to many questions. It also presents the opportunity for well-meant advice that doesn’t always help the way it’s intended. 

I get it — when you hear about someone’s struggles, you want to jump in and help fix them any way you can. By nature, I am one of those people who likes to get involved in ferreting out solutions and providing comfort, support, or intervention to anyone around me who may need it. The heart is in the right place and so, too, are the actions, but they don’t always land where they are supposed to. The trouble with offering advice and running interference on someone else’s real or perceived needs is that we don’t always need what’s being offered.

Sometimes, we just need to unburden our hearts and minds to those who understand what we endure on a daily basis. We need to know that we are seen and loved in the midst of it all. 

We feel helpless as we watch or listen, but cannot do anything to help. But we forget the power there is in being seen and heard. The human heart needs the chance to be poured out, to be expressed and kept safe, especially in the chaos of life with myasthenia gravis (MG). 

Years ago, when I was in the first throes of diagnosis, a very kind psychiatrist shared a piece of wisdom with me. I never forgot his words: “Living with MG is going to have a lot of unexpected challenges, and you will find that many will not understand. But don’t keep it all locked away or you will find yourself one day struggling against something more powerful than any disease: isolation.”

At first, I brushed his advice off and told myself I would be just fine. After all, I had my faith, family, and friends around me. But little did I know what I would face in the coming years and how it would grind away at those impervious beliefs that I had held onto so tightly. By the time I realized the fullness of what he was saying, I found myself in the midst of very dear people who tried so hard to understand but could not. And I found myself struggling with bitter frustration over misplaced advice. 

Unwanted advice can drive the recipient to become more reserved about their reality rather than opening up. It becomes almost easier not to reveal the whole truth than to be relegated to heartfelt, but painfully misguided, encouragement that makes us more acutely aware that we are not understood and the isolation that can bring.

It is also crucial to realize that not everyone can handle the truth and unburdening of the heart, and that is OK. Find someone who is worthy of your trust and time and let that person be the shelter you run to when times are hard and you need to feel emptied of the emotions you carry inside. In a strange way, the unburdening can make you feel filled up once again by that person who quietly shoulders the tribulations, exalts in the joys, and walks with you in an invitation to simply “be.”

Over the years, I’ve reflected on that doctor’s wisdom, and I’ve learned to build relationships in which I could freely be myself through all of the ups and downs. In which I knew my heart was safe and heard without the constraints of “What if you …”, and I knew that I would be affirmed and loved in spite of the mess. Where I was free to simply “be.”


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.


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2021 Myasthenia Gravis Survey Results

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Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.