Hi! My name is Bethany, and I just turned 38 a few months ago. I have multiple chronic illnesses, but the main ones that impact my daily life are mitochondrial disease (which brings with it complications like gastroparesis, dystonia, chronic pain, and dysautonomia), narcolepsy, arthritis, lupus, and migraines. I am also autistic and have mental health conditions. It looks a lot worse on paper than it does in life, which is both good and bad. I enjoy being able to blend in more at times (I do use a wheelchair so I can’t hide everything) but there are times it is frustrating that people can’t see just how hard simple things can be or how awful I might be feeling inside.
The mitochondrial disease has been present and active since infancy, but was not properly diagnosed until just about 5 years ago, and I have juvenile onset lupus which was diagnosed at age 12. I have lived with chronic, and for the most part invisible illness, my entire life. I did not start using a wheelchair until age 27, so up until that point there was no way at all to visibly tell that my life was different from those around me. I was invisibly, chronically ill in high school and through college, and in the workplace. I am now unable to work due to my health, which was a radical change in my life and a change in my dreams.
It often seems like I am invisible because my life has not followed the traditional, "expected" path of a successful career and family and traditional success. Instead of juggling children and a career, I am juggling appointments and medications. I think I sometimes make others uncomfortable, because I am a reminder that life can change in an instant and age is no guarantee for health. Doctors either write me off as too complicated to treat or too young to be dealing with so much. Very few people see beyond the surface, beyond a simple smile and what they wish to see.
I want to be seen, to have my voice heard, to be treated with dignity and respect. My strength is worth recognition, and my needs worth being met. I want the world to see that I, a younger adult dealing with serious chronic illness, exist and deserve to be included, to be listened to, and to be valued. I can bring unique insight and experience to the world in so many different areas. I just need someone to hear my voice, to see me.