Myasthenia Gravis (MG) is often called the ‘Snowflake Disease’. Just like a snowflake there are no two alike. MG differs considerably from person to person. The degree of muscle weakness and the muscles that are affected vary greatly from patient to patient and from time to time.
Over the last 33 years I have dealt with the physical and emotional aspects of MG,
an autoimmune, neuromuscular disease. The complexity of both the physical and emotional components can be astronomical. The intricacy stems from the various degrees and nuances of challenges, and characteristically creates layers of fear, despair, and isolation, and often loss of hope.
Many MGers feel those emotions at one time or another. The key is to embrace all
the deep-rooted emotions associated with a disease, move up the rung on the ladder to hopefully achieve acceptance. The best analogy I can describe in this circumstance is to visualize a ladder and its rungs. You cannot go from depression or sadness to acceptance in one step. It is one step at a time. With acceptance comes a place of hope. For without hope, we lose sight of the very aspect we need the most, to love oneself in spite of dealing with a disease.
Finally it is vital that we maintain a support system. Our support system does not guarantee that our emotions will shift immediately; however, it does help us find solace, and offer us comfort and encouragement. Fortunately I am richly blessed to have my husband, Gary who has enormous compassion and empathy, and continues to give his never-ending support.
In recent years I developed a number of friends through Facebook that have Myasthenia Gravis or a similar challenge. It has been my saving grace. Often alienation happens when we do not feel understood. Myasthenia Gravis (MG) is misunderstood by the very nature that we may look well. Nevertheless, our health
is truly comprised.
“A snowflake is one of God’s most fragile creations, but look what they can do when they stick together” ~ Author Unknown
In recent times I became Facebook friends with another MG Snowflake,
Kelly Moeller Drazek. Her words are straight-forward, open, and ring truth.
Read her passage below . . .
“MG fact: When you have Myasthenia Gravis, your muscles become paralyzed and useless by using them. That is the basic nature of the disease.
“There is no “out”. There is no “by-pass”. No amount of encouragement nor pity will change Science and how your body works. Surviving MG
is done by management of the paralyzation. It’s a full time job. It’s incurable. You often die of it when the disease refuses to be managed.
If you see anyone with MG carving a life out for themselves: they’ve earned it. If they are generally good natured about their plight,
they’ve earned respect.” ~ Kelly Moeller Drazek
Kelly, thank you for sharing your post. It’s all about transparency, education and awareness. In my book, you have demonstrated strength and earned respect.