So I’ve been musing recently about the role that friends, family, and other loved ones play in my experience of Lyme disease. Maybe it would be more accurate to say that, on occasion, I’ve been fuming, sometimes I’ve been impatient, and frequently touched and warmed by the kindness, love, and patience of those close to me. There’s no question that this is difficult for everyone involved, not just the patient. And us patients need to remember to have patience — we’re lucky to have people around us who care enough to try. But the people around us need to remember some things too. So … to give some advice on the bad and reinforce the good, here’s my attempt at a top ten list of things that others have done for (or to) me.
If you have Lyme (or are part of the network caring for someone with Lyme), feel free to write in a comment with other things that should go on this list, I’m sure I’ve missed some.
01 Educate yourself about Lyme disease so that you can offer meaningful advice about my treatment. Lyme disease patients have to make a lot of their own decisions about how they should be treated, and having another person with whom to discuss the options is incredibly valuable. Also, reading about Lyme disease will help you understand my symptoms.
02 Be understanding if I don’t seem interested in your new amazing approach to treatment. There are a lot of options out there, and I spend time thinking about as many as I feel able to process at any time, but I can’t treat anything by committing to one approach and then changing direction every time I learn about something new (which would be daily or weekly when I’m doing research, probably monthly when I’m not actively seeking).
03 Remember that any unpredictable chronic disease can have an emotional impact. Lyme can also cause neurological changes that affect the emotions. If I snap at you, become anxious, burst into tears, or otherwise, act out, be as supportive and understanding as you can.
04 Don’t assume you know how I’m doing. My symptoms change radically from hour to hour and week to week. If you ask how I’m doing, don’t suggest the answer, even if I look particularly bad or good. Many of my worst symptoms are invisible. Ask.
05 When I answer, don’t tell me that you are just as sick, that your aunt is just as sick, or that anyone 30 years older than me would have the same symptoms. While it is sometimes helpful to hear that I am not alone, or about folks who I might be able to ask for advice, these comparisons can also make me feel as if my experience doesn’t matter, or I’m complaining too much, or I’m overreacting.