Columns

“Maybe if you just exercised, you’d feel better.” “You look tired today.” “I don’t know how you do it.” Mental health, particularly how we feel about ourselves, is a touchy subject, especially when you’re battling a chronic and debilitating illness like myasthenia gravis (MG). Friends and loved…

I’ve had epilepsy since I was 9 years old. Because of this, I’ve spent part of my life around hospitals and doctors’ offices. I became aware of the pitfalls that can arise in patient care, and how they can be avoided. I learned early in life the importance of patient…

Feeling so, so tired — the kind of fatigue that makes me wonder if I’m going to fall asleep standing up. Adjusting medication routines because the old timing no longer works. Questioning my sanity as my libido skyrockets. These are all things that have happened since I began experiencing…

People tend to take certain abilities for granted, refusing help even if the need arises. Call it pride, embarrassment, stubbornness, or denial, but the result is the same: Some tasks may not get done if the person doesn’t request assistance. That includes activities of personal hygiene, such as bathing…

Do you ever just sit there, staring into space, wondering which diagnosis you can attribute your latest symptom to? Maybe you don’t even bring up new issues with your doctor, simply chalking them up to whatever health condition you know you have. I’m guilty of doing both. As a former…

In his book “Change or Die: The Three Keys to Change at Work and in Life,” Alan Deutschman presents his belief that humans are resistant to change. According to Deutschman, even when we know that our behavior will lead to death, change is so difficult that most of us…

On many weekends when I was a kid, my parents would take the family to the Boston Public Garden. We loved the iconic “Make Way for Ducklings” statues, inspired by the children’s book of the same name. During good weather, the gardens would fill with color, and no child could…

“That spot is saved for someone who really needs it, someone living with a disability.” You can unclench your fists and stop gritting your teeth now. If, like me, you’re a young(er) person with myasthenia gravis (MG) and utilize accessible parking spots, you’ve likely heard the above quote, or…

The short story “Rip van Winkle,” written by Washington Irving and published in 1819, ranks among the classics of American literature. It tells the tale of a man living in colonial America who fell asleep a subject of King George III and woke up a citizen in the newly…

Doctor to patient: “I went to medical school. I think I know what I’m doing and what is best.” Patient to doctor: “My [arbitrary number of years] living with [rare disease] trump the 15 minutes you spent learning about it in class. I think I know my body and what…