What Real Friendship Looks Like When You’re Chronically Ill
As someone with multiple chronic illnesses—including ankylosing spondylitis, fibromyalgia, ME/CFS, and chronic migraines—I know that I only have a finite amount of energy, and if I burn through that, I crash. Even so, that week, I’d been feeling pretty good, so I...
What I learned after 20 years of chronic illness
Since I’d initially feared I might have cancer, these diagnoses were initially a great relief to me. But that relief would be short lived. Soon, I resembled someone from an internment camp: a 150-pound man standing over six feet tall with infected sores all over my...
Learning To Let Go When Your Teen Has A Chronic Disease
On doctor’s advice, we had ceded control to my stepson over his meds. He needed to have the responsibility, they said. We needed to trust him. We thought he was on track, and the shock of this revelation was almost as big of a gut punch as when he first got sick....
How Our Relationship Survived When My Partner Got Sick
For my wife, a drive is never just a drive, because she struggles with a set of illnesses that are as frustrating and mystifying as they are debilitating. Which means, of course, that so do I. I thought I knew what I was getting into when we started dating. Em told me...
Will he be here a year from now?
The question was what my life was a year ago, but what I want to know so badly is what my life will be like a year from now. My husband and I got married without really understanding what that meant. I want to say it was because we were too young to know any better,...
Can we get better at treating chronic illness? 3 ways to do it
Roughly half of all adults in the U.S. have one or more chronic illnesses, with 25 percent suffering from two or more such conditions. These people navigate a medical system of widely variable quality, an ever-shifting insurance landscape, and real-world...
Mourning the Imagined
I can see my father in vibrant colors. He’s got snow white hair, earthy brown skin, and a speck of light reflecting off one of the lenses of his eyeglasses. Behind it is a tiny sparkle in his eye. Except that it’s an artificial sparkle. Years ago, in his 40s,...
Queer Crip Love Fest: The Two Great Loves of My Life
What does love mean to you? That’s a really interesting question for me right now because I’ve had some tough family stuff go on. I’ve always had a complicated family; I don’t have many blood relatives I am close to whatsoever. So family love has come from friends as...
Rubbish research
There is a major problem with medical research. And this is apart from ghost writing, dubious analysis, suppression of negative findings and conflicts of interest. The biggest problem is that much medical research is meaningless rubbish! How can I say that? Well let’s...
Teachable Moments
When my husband’s tumor was first discovered, our children were only ages 9, 7, and 5. They were really too young to be kept in the loop about what was happening, and we went out of our way to hide it all. They were too young to hear about doctors, illness, tests, and...
Understanding Anticipatory Grief in Caregiving
“No one ever told me that grief felt so like fear.” -C.S. Lewis
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