And it makes sense. Most of us have been turned away from the doctors we trusted. Friends and family write you off, claim you're making it all up. Spouses become fed up and leave.
I count myself blessed to have a husband who has been supportive. But there was a time, when I hadn't yet received a diagnosis, that he had asked me if I thought maybe I was a hypochondriac. And you know, I couldn't blame him. After being sick for 3 years, I cannot count how many times I questioned my own sanity. When doctors tell you that you "just have anxiety," you begin to doubt and second-guess yourself. It's only natural.
Having a chronic illness, especially one as controversial as Lyme, doesn't warrant casseroles. No one comes to your house to watch your kids so you can have a break. There are no cards, no money raising, no phone calls. You just don't get the support others with more visible illnesses get. Instead, people stop inviting you out, because you're unlikely to be able to come anyway. They ask, "so, are you better yet?" As if treatment is a short, minor inconvenience (and always successful). They compare you to their friend's brother, their aunt, their long-lost cousin, you know, the one who had Lyme and recovered in mere weeks. You're thought of as dramatic, seeking attention, or, like I mentioned earlier, labeled a hypochondriac. Or, your condition is completely ignored, as if you aren't even sick.
What we need is for the people we love to ask how they can help, or even better, just take the initiative to do something. We need them to admit they don't understand, but that they will walk beside us. We need them to educate themselves and take up our cause, because like it or not, Lyme is a part of us and always will be.
And what do we need to do? We need to give grace to those who don't understand. We need to forgive others for being insensitive or ignorant, because keeping a positive mindset is key to healing. We need to meet face-to-face with other Lyme warriors. We need to look into the eyes of someone who knows what we are going through. Being understood by another human being is priceless.
Most of all, we need to remember we are not alone. Thousands, if not millions, are fighting right alongside us. When one of us commits suicide, we all mourn. When one of us gives up, we feel weakened. When one of us reaches remission, we are filled with hope. And we all know, the only thing greater than fear, is hope.
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