![]() I remember coming home from my five-day hospital stay after being brought back from near-death, to a stack of brightly colored envelopes on my kitchen countertop. Whether the gaslighting is intentional or not, it is harmful. But even the most kind among them sometimes lets gaslighting slip in, unknowingly. I have many, many family members and friends who are empathetic. (Yes, working while sick-now that’s a real challenge.) I readily admit, I’m jealous of the able-bodied who live unencumbered by chronic disease. They have money to save for vacation, to put their kid in music lessons, or spend on overpriced coffee-while we’re constantly working to pay our medical bills. While my body is at war with itself, they are running errands, breezing into work with their energy-in-a-tumbler, and making plans that probably won’t get canceled. ![]() And they should consider themselves lucky to not truly understand what it’s like to always be under a huge cloud of illness. I know people mean well, generally speaking. That’s not going to exactly win over any friends, and frankly, it’s draining to always be proving to someone how sick I really am. I’m not going to announce every twinge of pain or symptom to every person I come into contact with. Plus, hyper-focusing on my health only makes me feel worse. I’m not even sure what that means, but people have said to me that I “don’t look sick” or that “you hide your disease well.” I’m not trying to hide my disease, but I am much more than just my disease. It shows up when it damn well pleases and wreaks havoc on our schedules and our bodies. Our disease doesn’t care what we have scheduled, and forget about our hopes and dreams. We can be perfectly fine one minute and quite ill the next - even bedridden. Those of us who live with an autoimmune disease will tell you how unpredictable our lives are. We cancel our plans, call in sick to work, and call the doctor - again. It’s always there, lingering in the background, ready to pounce. It’s all day, every day, even when the disease is not flared or is considered well-controlled. There are no vacations, no respite, no days off. Yes, that means that life as a chronic illness warrior is non-stop. Unfortunately, the person living with the disease deals with it twenty-four hours a day, seven days a week, three hundred and sixty-five days a year. To put it simply, there are a lot of people with these diseases, and there are a whole lot of diseases. Harvard Health Publishing reports some of the more well-known conditions including type 1 diabetes, Celiac disease, lupus, rheumatoid arthritis, alopecia, and multiple sclerosis. There are more than eighty autoimmune diseases. According to the National Institute of Environmental Health Sciences, over 24 million Americans have an autoimmune disease.
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