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The Social Intricacies of Lyme Disease

At one point, two years into my illness, I went to my doctor’s office to get one of my many blood draws. I was having a particularly rough day and was exhausted beyond belief. The nurse doing the blood draw (who I had gotten to know pretty well by that point) said, “Hey, how are you doing?” As I sat down in the chair rolling up my jacket sleeve, I quickly shrugged it off and dismissed it by saying the obligatory statement, “I’m fine.” She then stopped what she was doing, looked me straight in the eyes, and said, “No, you’re not. How are you really doing?” It caught me off guard. It was the first time someone had genuinely asked how I was holding up. It almost made me tear up because for the first time, she was giving me permission to not be OK.

She was giving me permission to stop hiding behind the facade and express what I was truly feeling.

In our society, we are taught to have a stiff upper lip and always act publicly like everything is OK even when it isn’t, in order to be “polite” and not burden others with any negativity or bring down a conversation. To actually admit to myself and to others that I wasn’t doing OK was incredibly liberating.

Now, almost seven years into battling Lyme disease, I’m still discovering the many intricacies of this disease – including those in which social interactions are concerned.

When I talk to someone I haven’t seen in a while, I notice I immediately become uncomfortable when those people ask what I’ve been up to. Knowing that I literally haven’t been doing anything other than lying in bed, going to doctor’s appointments, and honestly just trying to live day-to-day, I quickly steer the conversation elsewhere. Almost embarrassed that I don’t have anything to show for my life for the last seven years – no career, no graduate school, etc.

Then there are the people who find out I’m sick and ask me, “So, what do you do all day?” These are people who are generally well-meaning, but just don’t understand the struggle it takes just to survive with Lyme on a daily basis. They ask this question because they picture me bored just sitting at home (which to some extent they may be right), but what they don’t realize is the toll normal activities during the day take on Lyme patients; activities that healthy people take for granted.

They don’t see how I struggle to get ready in the morning. Planning out and taking my blood pressure medications about 30-60 minutes before even getting out of bed, so I don’t pass out within a few minutes of standing. Then struggling to stand long enough to take a shower, out of breath and collapsing on my bed immediately after, before I can even muster enough strength to get dressed. They don’t see me lying in bed during the day having seizures that make me feel like my brain is short circuiting. Or the anxiety and frustration that comes from the feeling that precipitates those seizures, because I know that I can’t control them or stop them from happening. People don’t see the constant pain that migrates throughout my body caused by my own body attacking itself. They don’t see me lying awake all night with insomnia, only to have to get up in the morning and repeat the same cycle.

I don’t blame people at all for not understanding, because how could you possibly understand the intricacies of this illness if you have never been through it?  Your friends and family see you when you are feeling well enough to present yourself to the world in some way, whether that be going to lunch, watching a movie, etc. And therefore their perception of what Lyme is becomes based on those interactions with you. Because they simply do not see the rest.

Whenever I do mention my illness in social situations, other comments I get a lot are, “Well, you don’t look sick,” or, “You’re too young to be sick.” Again, people mean well when they say this and mean it as a compliment, but it can make me feel uneasy and here’s why: It doesn’t validate how horrible I’m actually feeling. I may not “look sick” in the conventional way, but that doesn’t mean I’m struggling any less. Many Lyme patients, including myself, just want their disease to be acknowledged. We fight with doctors, the Centers for Disease Control and Prevention and Infectious Diseases Society of America to get them to recognize chronic Lyme, the last thing we want is to have this fight with our family and friends as well. We just want the people closest to us to show some understanding and acknowledge what we are going through, as well as realize that battling a chronic illness is a labyrinth of complex emotions, and we’re all just trying to find our way through it.

So if you know or love someone with Lyme, realize that a little understanding and empathy goes a long way. If we tell you what we feel or what we are going through, please listen and validate those feelings. Keep inviting us to things even though most times we can’t go, be a shoulder to cry on, and just try to be understanding of this horrendous disease. One day we will be well enough to rejoin you in venturing out into the world and doing the activities we once loved, but until then please be patient with us.

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Gettyimage by: lorenzoantonucci