1.) Chronic illness does not take the weekends or holidays off. I have had to spend Easter and New Year’s Eve in bed more than once. It sucks but there is nothing I can do about it. Please don’t make me feel any worse about this than I already do.
2.) I’m not unreliable. My health is.
3.) Just because I may not use my crutches or wheelchair on a given day does not make me all better.
4.) I get the best results when I combine traditional and alternative medicine. It’s very annoying when people tell me that one is better than the other. There are pros and cons to every treatment. When dealing with complex illnesses, you have to pull out all the stops and use everything you’ve got.
5.) I’m sick to death of unsolicited medical advice. Please don’t go there.
6.) It’s possible to be allergic to natural treatments. Some natural treatments can also make symptoms worse for some people. I am allergic to calendula (an ingredient commonly found in natural eczema creams), and ginger essential oil makes my nausea worse. This does not mean I am refusing to use all natural remedies. This means I know my body.
7.) I know more about my conditions than some doctors. That is not half as frustrating as when they pretend they know when they don’t. If it’s not their specialty, it’s understandable that I know more than they do. I wish they’d admit they don’t know what they’re doing and send me to somebody who does.
8.) Losing fantastic doctors to moving and insurance changes can be very stressful and devastating.
9.) Having multiple chronic illnesses is more common than most people realize.
10.) Taking medication with significant side effects does not mean I am being cavalier about what I put in my body. It means that I have carefully decided that the side effects are nothing compared to the disease itself.
11.) There are times when I have to clear my social calendar and focus on taking care of myself for days of even weeks at a time. Complaining about this will not change it. I promise i hate this more than anyone else does.
12.) Treatment is rarely one-size-fits-all.
13.) Getting an accurate diagnosis can take months or years for some people. I started having symptoms of endometriosis in 2006 and was not diagnosed until 2009. Thankfully my fibromyalgia and IBS were diagnosed almost immediately, but not everyone is that lucky. I’m having joint pain and dislocations of unknown origin, and I have no idea how long it will take to get that diagnosed.
14.) My definition of an “improved quality of life” is not the same as a healthy person’s. To a healthy person, it means being able to do as much as you want. To me it means being able to do some of what I want, and getting to a place where I am content with that. I don’t do physical therapy with the intent of someday running a marathon. I do it with the intent of hopefully someday having a bit less pain and fatigue when I walk and do everyday tasks. It’s not pessimism; it’s realism. I’m a human being, not Superman.
How about you? What do you wish people understood about live with chronic illness?