Dear medical professionals who treat rare disease patients,
Please take all your patients at face value. Those of us with invisible illnesses are not a joke, not “crazy,” not seeking attention, and certainly have better things to do than hang out in the hospital, ER, or home doing multitudes of treatment and therapy.
It’s no fun toting around medical records, our personal medical equipment, our specialty medications that are not usually on formulary at the hospital, and still try to explain our condition to doctors who don’t understand. Sometimes it seems they don’t want to because we are complicated, time-consuming and often not well.
It’s not fun to live with feeding tubes, PICC lines, port-a-caths implanted in our bodies, medication pumps, urinary catheters, assistive devices, and like me, oxygen and ventilator for breathing support.
Hear hoof beats? Think “zebra.” Not every patient is abusing the system. You never know what battle they fight every minute, every hour, every day. Currently there is no cure for most of our illnesses. It is extremely difficult to deal with our conditions since they usually mimic less serious problems; they almost always cascade differently in all of us, even though it stems from the same underlying rare disease.
It’s awful to feel like a burden your family, friends, and co-workers when you are sick. You have wishful thoughts of going out to dinner, a concert, a movie, or perhaps a special get away trip. But then bam, you get sick and all the wonderful plans you’ve made become out of reach. It’s maddening when your mind is so active, but your body is lagging behind. The fact is, your body doesn’t get sick on your schedule, my schedule, or anyone else’s schedule. It stinks to have a “go-bag” in your car just in case you have an unexpected hospital admission or ER visit.
For us rare disease warriors and their amazing support teams, every day is Rare Disease Day. It’s our life, our walk, and our new normal. It’s not always rainbows, but I have met some amazing people along this journey and unfortunately also met some really not so pleasant folks. It’s tough to be a healthcare professional — I know because I used to be one. However, it is also extremely difficult to be a professional patient.
So, medical professionals — please don’t ignore us or discount those of us with rare and orphan diseases. Please keep an open mind, an open heart, and be an advocate for our community. Isn’t that why you went into healthcare in the first place?