At this time, the head of ICU happened to be walking by and heard my husband scream ‘Myasthenic Crisis.’ He rushed to my side and yelled for them to intubate me. All of a sudden, I was VISIBLE. I heard Code Blue called over the intercom, and countless people rushed into the room in a frenzy. I remember it so vividly, I can still feel the warm tears slide down my cheek as I stared at my son, thinking this would be the last time I would see him.
I did not pray for God to save my life. I was certain I would die with my son watching. I didn’t want him to know I suffered. The last thought I had was my desperate plea to God, ‘Lord, give me the strength to die well. Help me to not look like I am suffocating. Lord, please protect my son’s heart from this.’ And I faded away.
I woke up intubated after a week in ICU and I couldn’t believe I was alive. I would spend over 2 more weeks in the hospital recovering.
After nearly losing my life, yet again, I was angry. Angry about having Myasthenia Gravis, but more importantly I was angry I wasn’t believed. I asked myself over and over, ‘Why am I continually being dismissed? Why did it take 6 years to get a diagnosis? Why are my symptoms consistently passed off as me just being emotional, depressed, marital stress, hormonal?’ And the answer was simple:
It is INVISIBLE.
But, was it really? Looking back on the memories and photos, it was all there, right in front of us all. But, when you live with someone and see them every day, it is easy to not see the gradual changes and symptoms.
I started thinking of all of the people that must struggle with invisible illness and the loneliness of it all. How many others are being told it is all in their head? How many other family members are unable to detect the slow and steady decline of their loved ones? I began chronicling my journey to share what it is like to live with an invisible illness. To the world, I appear healthy and ‘normal,’ when life is anything but.
I want to advocate for those who cannot speak for themselves. I want the world to understand just because you do not see it, doesn’t mean it’s not there. It is my hope EVERYONE is believed and supported through the trials and loneliness of invisible illness. It is my prayer a bright light can be shed on this topic so healthcare providers and loved ones can learn from my journey, as well as the countless others who have suffered from an invisible illness.
Just think, What if?
What if you were alone, even in the presence of many? Misunderstood and mislabeled. Needing so badly an advocate and a helper, but doing it alone… over and over, for years. What if your brain misfired, your muscles didn’t work, your body rejected everything good and accepted everything bad? What if your blood and immune system didn’t do what it should, so you needed 1000’s of others blood to override it? What if you can’t count the number of procedures and surgeries?
What if you had to take 10 different medications day and night and the consequences of them were incomprehensible? What if you were trapped in your mind, and couldn’t get out. If you couldn’t ever express the torment and anguish you experience daily, because no one really can possibly understand. What if you were sick, but people forgot, moved on? And you were still there, battling alone. If you took the same drugs a cancer patient takes, but you never get to ring the bell and celebrate remission like they do? What if EVERY doctor appointment you went to, you were alone? Trying to explain to a doctor, the unexplainable?
What if you knew it was just a matter of time before it all comes crashing down, because despite what everyone thinks, you are not that strong, you are not that brave, and you are no hero. What if you were me?
**This story was written by Jennifer Hall, published with permission. Follow her journey on Facebook and learn more about Myasthenia Gravis here.
