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.
10. 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.
9. 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).
8. 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.
7. 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.
6. 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 over reacting.
5. Help takes many forms. Some of the things I’ve needed most include someone to talk to, a ride home on a bad day, fetching something so I don’t have to get up and walk across the room, time to myself, a meal, a smile, a hug, a distraction, and a massage. As a caregiver, the very fact that you’re reading this means that you’re giving a gift, and you’ve probably done far more for me (or whomever you are helping). Even something that may seem small to you means a lot to me (though accepting that gift is not always easy, and it can be hard to find the right ways to acknowledge it). Also my needs are unpredictable and long term, and I don’t always know what they are, especially ahead of time. If you don’t know how you can help, just ask.
4. Trust me. If I say I can’t do something, don’t resent it or expect me to just try harder. I may seem fine, I may be fine, and I may still know that if I don’t conserve my energy something more important will be impossible later today. If I say I will do something, don’t try to stop me even if it seems like a waste of time or energy. It may seem unimportant to you, but I probably have a good reason for choosing to do it. And please, never accuse me of using my symptoms to get something, or get out of something. People with lyme disease are not sick because it’s convenient!
3. Offer advice (or better yet, information) about things you know, but don’t get angry with me (or pressure me unduly) when I choose not to follow your advice. I know that watching someone you care for suffer when you think you know how to fix things must be incredibly difficult. I’ve been on both sides of this: For example, someone close to me has cancer, and I personally believe that if he would start a vegan diet it could increase his life span. I wish I could just make him do it, but he has chosen a different path, and my not accepting that will only make things harder for him. I’ve also been on the receiving end of well-intentioned suggestions from several family members. I have enough doubts about every choice I make. Anger (and pressure) don’t help me, they only make it harder.
2. Believe in me. Lyme is invisible, sometimes the cure seems impossibly far away. I need you to believe in my symptoms, have faith that I will get through this, and help me marshal the strength to keep fighting
1. If you do nothing else, remember that I am not defined by my disease. If you are my friend or family member, then I am your friend or family member. Lean on me, confide in me, laugh with me, don’t treat me like I’m fragile or incapable.