Sometimes the hardest thing to do is explain to someone, particularly someone you love, what it is like to have Lyme disease. It is especially hard when those people don’t necessarily support you. However, we all feel it is important to at least try. Just don’t expect them to understand. How could they, really, unless they are living it.
Remember that it is not so important they understand as it is to make it clear how much you need their love and support. It’s okay if they don’t understand. More than anything, those of us struggling with Lyme disease need a cheerleading section while we go through this. We need someone to stand beside us and say, “Don’t give up! You can do this!” even in our most vulnerable moments. In those moments when we’re not sure we can go on anymore, we need someone there to encourage us and believe in us. Try to get that message across above all else.
Inevitably, someone will say to you, “You don’t look sick, so it can’t be that bad.” It often left me dumbfounded when I heard this. What do you say to that? How do you react? My first thought was to react in anger. But, I quickly realized that would not help to educate anyone on the disease and wouldn’t help me. You can come up with a thousand things to say. Find something that adds some humor to it. People tend to respond better to laughter. Plus, it may help you let it go and not be insulted by it.
I finally resolved to saying things like, “Didn’t your mother ever teach you that looks aren’t everything?” Or, “I would gladly trade bodies for a day to see if you still feel that way.” Or, “Thanks! But you know, Lyme disease doesn’t target looks, you could have it too.” Or, “People don’t look sick before having an unexpected stroke or heart attack either, but they can still die from it.” Or, “Too bad I don’t feel as good as I look.” Or, “Good genes will do that to you.” I had a lot of witty comebacks!
Occasionally, someone will ask you what it is like to have Lyme disease. Sometimes they are just asking to be polite, sometimes, they really want to know. It is a tough question to answer. If you can find a way to explain things in “their” language, in a way they may relate to, instead of spouting off facts and conspiracy theories, and anger towards the establishment….it MAY make a difference. And if it doesn’t, it’s okay. I found it was easiest to use analogies to get people to understand, based on your symptoms.
I would say something to the effect of “Imagine the worst flu you ever had. Then imagine sometime when you sprained your ankle, or broke a bone, or something that made it hard for you to walk or function. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you. Then imagine tripping and dropping things randomly, walking into walls, feeling like your hands don’t function anymore. Then imagine having the most severe migraine you’ve ever had. Then imagine not being able to eat. Then imagine the worst bout of depression and loneliness you ever felt. Then imagine having anxiety and immense fear. Now, put all of that together at once, and imagine someone telling you that it’s all in your head and what you are experiencing isn’t real.”
The Spoon Theory written by Christine Miserandino is a great way to explain it simply and with humor.
It helps to try to find things that they may have experienced in some way in life, get them thinking about what it was like, and then telling them to have it all happen at once and have no one believe you. If it’s appropriate, you could add in there that you lost your home, your job, your spouse, your family and friends, your health insurance, your ability to do all of the things you love, etc…. It’s tough getting other people to understand this disease. But anyone who has lived through it, or has stuck by someone who has been through it understands the severity.
Try to find people that support you…and don’t worry about the ones that don’t. I have provided some information for people trying to understand what their loved ones are going through on the next page. You can always send them to this website if all else fails. And, you can always carry around copies of the Lyme Flyer to hand to people. Educating others is one of the only things we have……and one of our biggest options for hope.
Courage is not the absence of fear, but rather the judgment that something else is more important than fear.