When a Talk With My Mom Led to an Epiphany About My Nightmarish Illness

I was born with chronic illness back in the days when there weren’t names for many of the illnesses we now have names for. I was the little girl in the bubble, allergic to so many things. I was in the hospital by the age of 5, again at 6, and not allowed to attend school for nearly a year of my young life. I never understood why I had asthma attacks after laughing with my family and friends, why everyone could eat whatever they wanted to but me, and what it felt like to play in snow or leaves.

As I grew, I became healthier and lived a fairly “normal” life, as can be the way of mast cell disease — what I was years later diagnosed with. But then, as I neared middle age, my life took a tumble again. I developed reactions to nearly all foods and was diagnosed with even more medical conditions. By the time I was 42, I was living on two foods a day and could barely get out of bed. I was diagnosed with autonomic nervous system disorder (dysautonomia/postural orthostatic tachycardia syndrome), mast cell disease and, after nearly dying from adrenal crisis, secondary adrenal insufficiency, just to name a few of the many illnesses on my diagnosis rolodex. Life became a nightmare I could not wake up from.

My college degrees seemed a waste when I couldn’t work and instead spent my days trying to find doctors and hospitals to help me become “human” again. I spent hours each day researching my and other conditions, talking with other patients, trying to help them and me. I felt hopeless, worthless and like life was not worth living. Before becoming so ill, I worked as a magazine editor and freelance writer. I felt good about what I did for a living, like I helped people with my health and other informative articles. After becoming so sick, I felt I could no longer contribute to my community, and I fell into despair.

Then one day, I had a talk with my mom. I told her how I was feeling, so worthless and hopeless. My mom, not usually one to give advice, said something that would change my life. She said:

“Linda, if you were well, would you be in contact with those who are ill? Would you be doing what you’re doing now, talking with others about what you’ve learned over the years about illnesses, doctors and hospitals to help them when you meet them in hospitals and doctors’ offices?”

I said, “Well, no, I would still be writing and doing my own thing, I guess.” She said, “Exactly. So I guess you’re right where you’re supposed to be, helping who you help, doing what you can for those who are sick. You are helping, just not in the way you thought you would.”

That talk led me to this simple epiphany: I wasn’t dead yet. And as long as I had breath, I was going to do as much as I could to help others, using all I had learned through the many years of researching my own illnesses, interacting with doctors and hospitals, and talking with other patients.

I joined Facebook, and after talking with others on groups, I started my own. It’s been three years now, and my group, Spoonies Paradise, which has over 950 members and the motto “We Are More Than Our Illnesses,” is something I truly hope helps others find the positives in their lives — like my mom helped me to find — by sharing the good things and successes in our lives. In so doing, members can see they still have good things to help keep them going, and this brings joy and, more importantly, hope.

I don’t know why I was sent on this journey with my health, but I know it has led me to  people I never would have met. The sharing of experiences, information and hope has led me to do something good and positive with my life, far more than I may have done had I remained the healthier form of me. Living with chronic illness is something I have always had to deal with on some level, but never did I think it could actually lead to blessings for me and others I’ve had the honor and privilege of meeting.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.