I Am Not MG


The message I would like to send out beyond the MG community is a simple one – I am not MG.

It is a part of my life. It is not who I am. I want you to know about this disease. I want you to have a glimpse of what our lives are like. Not for pity. But because myself and others like me, need understanding. Understanding is not only critical to our emotional health, but also critical to our physical safety and medical needs.

We need medical staff who are educated enough about MG to stop making mistakes that could cost us our lives. We all need friends and family who understand just enough to hold us up – not push us down.

Stress is a well-established trigger for MG flares. We don’t need the stress of someone failing to understand that this disease can flucuate rapidly in severity and saying things in an accusatory tone like, “Why can’t you come to the family reunion today, I saw you in the store yesterday?” or “Why did you show up to the family reunion in a wheelchair, when I saw you walking in Target yesterday?”

Instead, perhaps you could say, “I’m really sorry you couldn’t make it to the family reunion. I’m happy you were strong enough to go to the store yesterday.” or “I’m sorry that you need your wheelchair today, when you didn’t yesterday. But I am so glad that you could be here with us today.” Kindhearted expressions of understanding can mean more than you know.

And we certainly don’t need anyone to verbally accost us in parking lots because they don’t understand why we require a handicapped parking permit. There is a huge lack of understanding about the fact that not everyone with a handicap tag is in a wheelchair. That doesn’t mean our need isn’t serious and valid.

And if someone in a wheelchair stands up, they aren’t “faking it”. They simply lack the strength and ability to stand and walk all of the time.

Or maybe we just need you to understand that some days we are able to talk on the phone and other days we just aren’t, and that is not a reflection of our feelings towards you. It is simply a reflection of our muscle strength in that particular moment.

From a medical standpoint, we need you to understand that things like stress, high temperatures, humidity, physical activity, certain medications, etc. do not impact us in the same ways that they impact others without MG. Something as simple as a power outage could be life-threatening to us.

Four years ago this month, I almost died due to an MG crisis brought on by the effects of a power outage. So few people outside of the MG community understand why storms make me uneasy now. They forget that I almost lost my life to one and that it could easily happen again.

We don’t need pity, we need understanding. You don’t have to remember how to pronounce “Myasthenia Gravis”. You don’t have to know all of the complexities of this autoimmune neuromuscular disease.

But you do need to believe us.
We are the experts when it comes to our disease. Not our neighbor, not our friend, and certainly not a judgmental stranger. Those of us living it everyday – we are the experts in how this disease impacts our life, in our own personally unique situations.

Sadly, we often know more about this rare disease than 3/4 of the medical personnel we come in contact with on a regular basis.

You need to trust us. You need to respect us. Everyone deserves respect, regardless of their abilities.

I am not MG.

I am not a disease.

It is a part of my life. It is a challenge that I must deal with. Everyone has challenges – everyone.

I refuse to be defined by my struggles. MG is not who I am. Who I am is separate from what I happen to face in life. What I face throughout my life may change me. But I hope that I only allow it to change who I am in the best of ways. The ways that teach me to be a more grateful person, to fight hard, and to not take things for granted.

I happen to live with a disease. I fight a disease everyday of my life. I fight it for myself. I fight it for my family. I fight it for my friends. I fight it for those who have lost their battle, may they rest in peace. Most importantly, I fight it for my children.

I go to war every single day with my own body, for every move that I make. I go to war for every single breath that I take. I go to war with antibodies that fight my muscles, including the muscles used just to inhale and exhale – something most people take for granted. At times we may need respiratory assistance to get through a crisis.

We also go to war with the often devastating side effects of the unpleasant treatments that are available to help fight our disease.

Some moments are easier than others. Some moments take everything that I have in me, just to keep fighting. But I do and I will for as long as I can, or until we have a cure.

I prefer not to be labeled.

But if you must label me, label me a warrior.

I am not MG.

~ ~ ~

written June 2016 by Debbie Norman 
founder and director of WWMG 
For more information on MG, visit MG in the Simplest of Terms