Sometimes We Need Someone to Listen
Sometimes we just need someone to listen, to be there. Not for offering advice. Not even for consoling us or providing encouragement. Sometimes we need to have a sad day, if you will, a “pity party". And that is ok once in a while!
We may need someone who will listen to where we are in that moment and allow us to feel what we are feeling. Someone to hear the good and bad, like a sounding board, so we can hear ourselves verbalize our thoughts.
It could be a good friend, family member, or a support group. Someone who understands myasthenia gravis (MG) or is trying to understand.
We all differ in how we are experiencing life with MG - physically, mentally, emotionally, and in our treatment. While there are some similarities, each body is unique and no 2 people respond the same, much like a fingerprint or a snowflake!
Supporting each other
Yet, how do we explain MG to the outside world? It is not like cancer. That has touched so many lives with much publicity due to the vast numbers who fight it all over the world. In 2020, it was estimated that 1,806,590 new cases of cancer would be diagnosed in the United States and that 606,520 people will die from the disease.1
In the United States, an estimated 20 in 100,000 people have myasthenia gravis. That is about 36,000 to 60,000 cases. Though, MG is underdiagnosed so the prevalence may actually be higher.2
That is a large difference in support for us, and why we need each other. We should not be islands floating alone, but a large mass that must be seen and heard by the general population!
Creating a plan to reach out
Do you have a safety plan in mind when you just need to be heard? We have safety plans for other types of emergencies like a fire or bad weather. By planning and making connections beforehand, it takes the fear and rejection out of what to do during these low times. Here are some questions to consider when creating a plan:
- Where or who will you reach out to?
- How will you reach out?
- What information can be provided to friends and family to help get the support you need from them?
- Are there other outside resources or organizations you can go to for help?
Every family dynamic is different. Unfortunately, some may never be a good support system even with all the information provided. But making those connections with an outside resource like Myasthenia-Gravis.com or whomever you feel comfortable with is of vital importance.
Teaching others how to treat us
We never know when this rollercoaster ride with MG will have a hairpin turn with a sudden drop! Myasthenia gravis can leave us feeling like we are alone, forgotten, not cared for by anyone, including ourselves. These are the lies we tell ourselves during the low times.
I learned a long time ago that no one is going to love us or care for us the way we want them to. Disappointment will happen whether you are dealing with health problems or not.
It is our job, through the way we treat ourselves, to teach others how to treat us. Love yourself first, just how you are, MG and all. So, I challenge you how will you reach out?
Were you initially diagnosed with generalized MG or ocular MG?