I remember being young and thinking that once I was old and could make all of my own decisions, my life would be made. If that little kid had known what I do now, she would have hid in her bedroom and never emerged. There are days when I wish someone would swoop in - someone as knowledgeable as I perceived adults to be at the time - and make the right decision for me. My intelligence hasn't diminished, I've just realized how little knowledge I've been able to glean in the vast scheme of things. That know-it-all kid has learned again and again that things are not simple. Getting ill really drove that home - not only when I struggled with decisions about my own health care, but when people felt compelled to inform me what I should be doing differently.
What is Systemic Lupus Erythematosus?
Systemic lupus is an autoimmune disease and is often referred to as an "invisible disease." Some of us get what is known as a malar rash across the bridge of our nose, but most of us show very few external physical symptoms. The majority of the symptoms are internal, even though they may be painful.
To oversimplify the disease, systemic lupus is a dysfunction of the immune system that causes immune cells to see the body's own cells as invasive enemies that must be destroyed. This means that at any given time, the body may be triggered into turning on itself. Sometimes this destructive behavior is targeted toward a nervous system, joints, or organs. It's a difficult disease to diagnose because no two patients present the same way and the disease can mimic many other diseases. No one seems to understand what causes it (it's thought to be a combination of environmental factors and genetics because there are some genetic trends, but identical twins may not both have an active form of the disease). There isn't a simple blood test - lupus patients have a positive ANA, but so does a percentage of the healthy population. The other tests (APLs, Anti-Sma, Anti-dsDNA, etc.) may hep diagnose the condition, but only a small percentage of lupus patients have positive results for any of those tests. A combination of blood work and symptom history are used by experienced rheumatoligists, and in my experience, general practitioners may still question the diagnosis on any given day (which is when I refer them back to my rhuematologist).
My first lupus flare up was frightening. The symptoms sucked, but not knowing what was happening? For a control freak, perfectionist such as myself, I had to wonder if some higher power was punishing me for actions taken in a past life. Because lupus is hard to diagnose, I wondered if it was in my head. So did other people. My first reaction at diagnosis wasn't the typical panic. I felt vindicated. "I told you something was wrong!" Even after being diagnosed by two experts (rheumatologists), I've had a general practitioner question me along with friends, coworkers, and strangers. I've been told that I have Lyme disease (which is an awful disease, but I've been tested multiple times for it) along with a myriad of other alternatives.
There have been some lessons driven home through experience. One of the first symptoms that comes with a flare up is unexplained and dramatic weight loss. I've been followed into the bathroom by well meaning coworkers who suspected bulimia after watching me pack down a huge meal, and lectured by well meaning survivors of eating disorders. I used to jump to the same conclusions when someone is painfully thin. Now I ask more questions or try to reserve judgment.
The biggest lessons I have learned are to not question someone's diagnosis and to never question their healthcare decisions. If they decide they need to take the latest medication, more power to them. If they want to sit in a smoke hut in Albuquerque, I hope it works. If they want to turn to prayer and fasting, I just hope their doctor gives them sound advice and they listen to the impacts something like that can have on a stressed body - but I hope it helps. If a friend has decided that they no longer want treatment and it's time to let go, I will sit by their side if they let me. On the inside I might be frustrated or angry because I'm selfish and want them in my life longer, but I understand that it is their choice and they didn't come to the decision lightly.
What have you learned through illness? Have there been times when an assumption was disproved? What has frustrated you when you were ill?