The Whispered Roar
— Shawna Barnes

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…

“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…

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…

Post-traumatic stress disorder (PTSD) is one of those taboo topics many people don’t seem to want to talk about. Good thing I’m not like most folks. I have PTSD from my time in the U.S. Army as a result of combat, surviving assault, and a sprinkling of medical trauma.

What’s that word again? You know, the thing where you can’t remember and your thoughts are fuzzy? Oh yeah! Brain fog. It may be anecdotal, but brain fog seems to be one of those symptoms that crosses the threshold for many autoimmune diseases. Myasthenia gravis (MG) is not…

Rystiggo (rozanolixizumab-noli). Vyvgart (efgartigimod alfa). Soliris (eculizumab). Ultomiris (ravulizumab-cwvz). The one thing these four names have in common is that they’re all relatively new medications to treat myasthenia gravis (MG). The other thing they have in common is that not one of them plays a…

As she celebrates 10 years of marriage, Shawna Barnes reflects on planning a wedding while managing serious health challenges. She shares practical tips for creating a meaningful, low-stress celebration by prioritizing your well-being.

Grief comes to me more often than I care to admit. It doesn’t just come when a loved one passes away. When a person acquires a rare disease like myasthenia gravis (MG) later in life, as I did, grief seems to come in cycles. Usually I try to…

Six years to a tentative diagnosis. Seven years to a confirmed diagnosis. Eight years to thymectomy. Eleven years to find a treatment plan that worked. These are the landmarks of my myasthenia gravis (MG) journey. The starting point was my medical retirement from the U.S. Army…

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It’s been a year since I started writing about the weight gain I experienced while taking high-dose prednisone to manage…