How to Be Helpful When Myasthenia Gravis Awareness Month Is Over

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by Shawna Barnes |

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“Hey, Shawna, I have a (friend/co-worker/family member) who was just diagnosed with myasthenia gravis. Can I connect the two of you?”

One of the advantages — and sometimes disadvantages — of being as outspoken as I am about my battle with this crazy disease is that people turn to me for guidance and help. I’m a nurturer by nature — it’s why I loved being a medic in the Army. It seems that the amount of awareness I bring to this rare disease is directly correlated to the number of messages I receive in return.

Many of us in the myasthenia gravis (MG) community share what our life is like during June, which is Myasthenia Gravis Awareness Month. In June, many of us appear all too happy to answer questions — even the crazy ones that prompt a long side-eye indicating, “I cannot believe you just asked me that!” Yet we answer nonetheless — it’s Myasthenia Gravis Awareness Month, after all.

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Yet when June is over, we grow tired of repeatedly answering the same questions. Maybe we’re thinking something like, “Weren’t you paying attention during Myasthenia Gravis Awareness Month?”

Sure, it can be frustrating to always feel like we have to educate the public, and it can be even more frustrating when we have to educate our doctors. But if we’re not informing the world around us what it’s like to be like us, then how can we expect awareness to turn into action to get us closer to the change we so desperately seek? And by change, I mean better treatment and, one day, a cure.

How can we turn awareness into action? I have a few ideas:

Action step 1:

Be open-minded and accept that those in your immediate community may not see everything you share on social media, hear the conversations you have in a group setting, or be in a place to fully understand what you’re saying. Unless people have a way to apply new knowledge to something they are familiar with, it can be difficult to retain that information. If they’re asking, it means they care. And when we need our support network on the days when MG is kicking our tushies, we’ll wish we had taken the time to help them understand.

Action step 2:

On the flip side, if you’re the one asking questions, be mindful of your friend’s general well-being that day. If they are short-tempered or not in a place to be able to answer questions, be willing to come back to the conversation later. Ask your friend, family member, or colleague if today is a good time to ask some questions because you want to better understand what living with MG is like and how you can best support them. Enter the conversation with the understanding that it may not be a good time because they might not be feeling well.

Action step 3:

If you are uncomfortable answering questions about myasthenia gravis, don’t just shoot a person down and end the conversation. Arm yourself with resources that you can direct them to — like this website! Something as simple as, “You know, I really appreciate you wanting to know more about this rare disease, but I’m not really comfortable or in a position to answer your questions right now. Myasthenia Gravis News or the Myasthenia Gravis Foundation of America are two great resources I’d encourage you to check out.”

Let’s be real: MG makes us get in our own way a lot. We don’t have to address it only during Myasthenia Gravis Awareness Month. Let’s turn awareness into action that is long-lasting and effective.

Change starts with you. Build awareness and acceptance in your community that ripple out further and further until your ripple meets my ripple and we start to see real movement.

What are your favorite resources to share with friends and family who ask about MG? If you’re a family member or friend, what are some resources you’ve found helpful? What approach are you taking during Myasthenia Gravis Awareness Month? Please share in the comments below. 

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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.


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