6 Ways Lyme Disease Has Affected My Inner Social Butterfly

In my younger years, I loved parties, loved going out with friends, and I always had to have something planned for Friday and Saturday. How that shifted when I had kids. For years after they were born, I planned nothing for the early evenings after work. I awakened early, worked a full day, had two small kids to pick up from daycare and was exhausted. I questioned how other working adults had the energy to drive their kids to activities. I did not volunteer to help with the kids’ after-school activities or get involved in community events. By Friday nights, I was completely wiped out. This was my new normal as a young parent; I never intentionally set out to be antisocial.

Once I was diagnosed with chronic Lyme, I withdrew even more from society. Here are six reasons why I’m not the social butterfly I used to be.

1. When the Lyme disease flares up, I can be too tired to walk down and up stairs or walk through several hallways. At times, I’ve been dizzy also. I just do not have the stamina to leave my space, travel, and return. When I’m not feeling well, every action requires a rest period and my body pays for it.

2. Lyme has affected my memory and my vocabulary retrieval. It’s created a brain fog in me that has nothing to do with “age.” (With treatment, some of my memory has returned and some of my brain fog has departed.) It’s not as easy for me to hold a “light” conversation anymore. It’s not as easy for me to hold a serious conversation either.

3. I don’t watch my TV. I don’t get to the movies. I cannot handle much stress or sadness in a show and my attention wanders quickly. Because my family has been through so much turmoil, I only want happy shows with happy endings. I prefer to read, and I read a ton, but I intersperse that with checking everything on my iPhone. So I’m not about to have a conversation with anyone about “Game of Thrones” or the latest Netflix series.

4. Small talk is hideous for me. I have huge issues on my mind – mainly, recovering my children (and me) from chronic disease. It’s difficult for me to listen to people talk about their successful child and complain about academic or athletic issues that I only wished my ill kids struggled with. It’s hard to hear about parents of healthy kids whine about driving a child to zillions of activities when I’m driving my child to zillions of doctor appointments. It’s hard to hear about family vacations when we don’t take vacations anymore. But I never say anything. I do care about others and I want to be a good friend. So I listen. It hurts.

5. I speak Lyme. Yeah, I can’t help it anymore. I gush Lyme and co-infections, International Lyme and Associated Diseases Society (ILADS) and Lyme Disease Challenge. Not everyone wants to hear how Lyme tests are frequently incorrect and how most infectious disease doctors aren’t familiar with chronic Lyme. You don’t get it until you get Lyme yourself. I might be excited about my advocacy work because I am desperate for change, but in truth, everyone has their own pet issue.

6. When I’m not feeling well, I become more introverted. I just want to hole up in my little home, on my big comfy bed and connect via the internet with the friends who are doing the same thing. I’ve even taken online personality tests and they differ based on how well I’m feeling! Flare? Total introvert. Feeling well? The extrovert and introvert sides are balanced.

I do love to see close friends. These are the people who innately understand me, many of whom also speak chronic disease, who are warriors and survivors, with whom I’m often quite comfortable. I have friends who are not a part of the Lyme community, who are not struggling, but are excellent listeners. Friends who make me laugh, who care.

I’m not always invited out, but when I am… well, I used to always go. Now… sometimes. If my family is in crisis, I stay closer to home because I can’t treat a cocktail party like a therapy session. I occasionally avoid seeing people who are friends because I don’t want to break down in tears as I try to gloss over how challenging our lives are right now. I find that when I do see people, I ask a lot of questions so that I don’t have to talk as much about myself.

Socializing should not require false smiles and acting ability. If it takes way too much energy, I end up back on my bed. And then I can’t get out and socialize.

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