TOUCHED BY LYME: It’s time for me to stop joking about my health
Guest blog by Shira Gusfield
If you ever ask me why I’m at the doctor’s office so often, I say I don’t feel well most of the time. I’ll probably give a small laugh, shrug my shoulders and say with an embarrassed smile on my face, “Oh, I’m just the sickest healthy person you’ve ever met.”
This might elicit a little giggle or a knowing nod or just a pitying look from you. But you probably won’t ask many more questions, and if you do, I’ll make some more jokes about my symptoms, how silly they are and how much I’m overreacting to them.
I can’t tell you how many times I’ve had this interaction. It pretty much always looks like what I described. I’m sure people walk away from these conversations chuckling about how odd I am, and then they likely don’t think much about it anymore.
And next time they see me, they laugh when I accidentally let it slip how ill I feel because they think they know that I’m just being a hypochondriac.
But here’s the problem with all this: I’m not the sickest healthy person. I’m not a hypochondriac. I’m not overreacting to my symptoms. I have a serious chronic illness, Lyme disease, that I have to work very hard to push through every minute of every day. Yes, I look healthy. But I’m not healthy. I am sick. I desperately want support and understanding about my illness, but that’s not what I receive when I make jokes about my symptoms.
I know that people won’t take my challenges seriously if I make light of it, yet I continue to respond to questions this way. It’s hard for me to understand why I do this. I think it’s partly because I’ve struggled to accept the Lyme disease diagnosis.
You see, I keep comparing myself to others with Lyme disease. When I compare my symptoms and experiences with Lyme disease with others who also have the illness, I always end up telling myself I’m not sick enough to have Lyme disease.
I start to believe my life hasn’t been destroyed enough for me to have Lyme disease. In a weird way, I don’t feel deserving of the diagnosis of Lyme disease. And since I can’t truly accept I have an illness, it leaves me feeling like I must just be blowing my symptoms out of proportion.
Somewhere inside me, though, I know I’m not overreacting. I know I have Lyme disease. And I’m know this illness is challenging my ability to function on a daily basis. It’s so isolating to be one of the only people who knows this truth. I have few people to reach out to when I’m having rough days or new symptoms. I have to figure things out on my own, which is very difficult when my thinking is so clouded from Lyme disease.
So, I need to stop comparing myself to others. But first and foremost, I need to stop joking about my illness with other people. Comparison is a difficult thing to stop, but I can make a conscious decision to be honest with people about my struggle. I need to train people to take me seriously.
I think my jokes have essentially trained my friends and family to minimize my struggles, so now it’s up to me to retrain them with direct honesty. It’s vital that I do this, because I need support to overcome my illness. My friends and family need to understand how the challenges I face and how hard I’m trying to keep going forward with my life.
I’m making a commitment as I write this not to minimize my symptoms from or my experiences with Lyme disease. Never again will I refer to myself as the sickest healthy person, or make any similar jokes. I’m going to help myself achieve wellness and health by accepting that right now I am sick.
Shira Gusfield lives in Southern California.