I belong to many Lyme Groups on Facebook – and perhaps you do, too. Tonight in my newsfeed was a heartbreaking plea for prayers and positivity from a fellow Lyme sufferer who must live with her parents, can hardly work and stay afloat and endures an onslaught of negativity on a daily basis – everything from their calling her a welfare queen to throwing in her face that she lives there virtually rent free. She acknowledged that they are sick people who came from poor parenting themselves and perhaps are doing the best they can. I think there is a lot to learn from this beautiful lady , and how compassion and understanding for THEM helps HER.
I have been fortunate. No one really doubted me. I don’t know why. I surmised that maybe it was because I was an energetic person, always on the go, climbing mountains on hikes, going for walks and playing with my son. There was a joie de vivre about me that got snuffed by Lyme quite quickly and people noticed that. Had I been a rather mellow person to start with or someone who enjoyed watching movies and being home, I might not have had people take notice so much. But I don’t think that’s it. I think it’s luck and little more.
There have been misguided words of wisdom and insight through the years but never from anyone who mattered very much. My favorites that people have said include “You’re just used to being sick,” and “Maybe you should get more exercise,” and the pregnant silence following “You don’t look sick.” That silence that begs an explanation, a justification. There is an entitlement to that silence, an entitlement that takes quite a bit of audacity.
It’s easy to get sucked into a power struggle with people, whether they are well-meaning strangers, coworkers, friends, spouses, family. It’s easy to try to make them understand something they are incapable of understanding. We can tell them what happened and what it’s like, as well as present any validation the medical community has given us . We can show them our medications. We can tell them who we USED to be as if we can show them a “before and after” and awe them with the contrast, thereby ending the debate. We can use up all our “spoons,” (see more about the spoon theory if you don’t already know of it: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) trying to align these people with us.
I remember running late for work on a day I felt particularly wiped out and in pain. I left my cell phone upstairs. I started to cry (I’m not a crier, by the way…..), thinking about how I would have to tap into my reserves for the entire day so early on. Climbing the stairs was a big to-do for me. I decided I needed the phone so my son’s school could get me if there was an emergency. Of course there wouldn’t be an emergency, but there MIGHT. Am I on a tangent? No. We sometimes choose to tap into our reserves to try to make people understand things they are incapable of understanding.
Before this happened to me, I did NOT understand people who were sick or had chronic pain or disabilities or people who had the limitations of old age. I just did not. It pains me to think of how I thought of people and how I must have come off at times even if I did not outright say anything malicious or even buttinski-ish. I have to remember that because the person I was is precisely the kind of people we’re dealing with , and there was nothing you could tell me that I would embrace or that would imbue me with a sudden understanding and compassion. Thankfully I have it now.
When we don’t understand something, we reflect on what we know. When presented with people who had limitations or illnesses or old age, I could only reflect on limitations I have had myself. There were blessedly few. I had pneumonia once. I sprained an ankle once. I had been pregnant once. When I was a teenager I had a few seizures. Everything I had were things that would come to an end. Certainly not enough for me to understand what it’s like. I try to remember the fact that people are products of their own experience and sometimes they “get it” when I tell them the fatigue and weakness is like the flu – the real flu and not the “throwing around the word flu” type of flu. They may nod slowly and knowingly, surprised to hear it is that debilitating. But that’s all. They can’t wrap their heads around the other nuisances such as joint pain or nerve pain (how do you even describe that?) And I can’t make them wrap their heads around it. Sometimes I forget that and I try.
Are there any words of wisdom to apply to self-centered family members who say unhelpful things or cast doubt on us? Probably not. It’s cold comfort to say “it’s them not you.”