Nobody told me that one night I would go to sleep and never live another day as a healthy human. Or, that it would happen in the prime of my life.
I used to be the nurse. Now I am the patient.
Nobody told me that most of the time, as a patient, I have to advocate for myself because I can’t always count on anyone else doing it for me. It is up to me to keep track of every single medication, test, appointment, and most of all, what everyone else is doing. It is up to me to communicate between providers. It is up to me to make sure things are followed up on.
And hardest of all, it is up to me to make sure nobody makes a deadly mistake.
Nobody told me how much of a struggle it would be to maintain any semblance of a social life or maintain friendships. Not having wheelchair access. Stairs becoming a barrier. An hour lunch out can take two days to recover from. A whole day activity? Up to a week. And this is if I even make it out at all.
But, I appreciate those that make the effort and stay.
Nobody told me that living with multiple chronic illnesses is a full-time job. Days where I tell myself that I will take time out of my day to do what I love most. Calling a friend. Writing. Checking in on a family member. Getting out of the house. But, my “job” gets in the way. The next thing I know, it’s 2pm and I can no longer function. Appointments, managing medications, phone calls, daily treatments, physical therapy, the list goes on and on.
I want to go back to my real job, my profession. Or, any job for that matter. Just not this one.
Nobody told me the trauma I would endure by the hands and mouths of people who are supposed to be healers. The eyes that look doubtful. The mouths that interrupt, dismiss, and belittle me. This does not apply to all, but it does apply to so many of them.
The gaslighting I endure is something I never expected.
Please listen to me, doctor.
Hear what I am saying.
Medical procedures where not enough sedation is given or is not given at all. Male doctors telling me that a gynecological procedure will only be a pinch and then I am pulling over to the side of the road trying not to pass out or vomit from the pain. An aggressive physical exam.
Having to constantly fight for what will keep me from experiencing yet more trauma.
Nobody told me.
We’ve been doing this a long time now. So many stories we did not expect. And now throw in aging… aging women are even less validated. These years are difficult and lonely sometimes. Just know you have friends that have been with you and that understand. At a cellular level…I understand.