And here I am, your invited guest— it’s incredible! I enter your house… waiting for directions to get me safely through enemy lines. Psalm 5:7-8
“I wonder where she is? She looked fine yesterday.”
“He’s always very tentative with his response, so I don’t know if he’s coming.”
“Hey, a group of us are going to go rock climbing and then play games at a large arcade. Wanna come?”
Oh, the difficulties of living with an unpredictable chronic illness! The comments above are ones I’ve heard when others have invited someone to an event who has a chronic illness and who has had to decline in the past because of not feeling well or a flare of symptoms.
When I get an invitation, I often say, “Can I let you know?” or “When do you need a response?” I check the calendar, not only for conflicting events, but to see if it’s a time of the month that I usually have flares or more pain. Or possibly it’s a time when I’ll be making a change/upgrade in my medication, and I don’t know what side effects I’ll have.
I know any of you with Lyme disease or another invisible chronic illness can relate.
I was diagnosed with Lyme disease and two co-infections, Babesia and Bartonella, in 2007. They had infected my central nervous system, so I had symptoms that appeared that I was having a “nervous breakdown.” After 2-1/2 years of treatment from a Lyme Literate doctor (LLMD), all of my symptoms went into remission. Since then, one or more of these infections has activated several times and I’ve had to go back into a treatment protocol.
There’s good news and bad news when treating Lyme or a co-infection. You have periods of feeling really crappy, possibly bedridden, before you get better because of a “herxheimer” reaction. The Jarisch-Herxheimer reaction–often shortened just to “Herxheimer” or “herxing”—happens after you start antibiotic treatment for spirochetal infections like Lyme disease, and tick-borne infections. Here’s a good description of a “herx” by one of the top Lyme disease doctors in the U.S. (Dr. Horowitz): It’s a “temporary worsening of the symptoms of Lyme disease that occurs when the Lyme spirochete is being killed off by antibiotics, creating inflammation, which then create inflammatory symptoms, including increased fever, muscle and joint pain, headaches, cognitive impairment, anxiety, panic attacks and depression. THINK having the flu with anxiety…that’s what it feels like.
But this is a GOOD thing, as I know my medication and/or supplements are killing off the bacteria. The problem for us with Lyme or a co-infection is that we never know when this is going to happen. So, I can go to bed feeling perfectly fine and wake up feeling like a truck hit me. Or I can start the day fine and be very active, but, later in the day, feel all of these symptoms come on and then I’m flat on my back.
When these symptoms are so unpredictable regarding their frequency and severity, it’s hard to make a future commitment to anything. Oh, the first time you have to beg out of an event, it’s not so bad. But when it happens several times or becomes the norm, you know you’re disappointing others and missing out on activities you’d really like to do. For an extrovert like me, it’s excruciating! I thrive on face-to-face interaction with others.
Over time, living with a chronic illness, especially one like Lyme, becomes extremely isolating: from being physically confined at home due to herxes, from the resulting loss in social relationships, and from the lonely feeling of having to deal with illness in solitude because others don’t understand. It’s actually one of the most difficult “side effects” of this illness that doesn’t have an easy fix.
Graphic courtesy of Lyme Loonies.
One person with Lyme stated, “It’s hard if I can’t reciprocate. I try to build community, but I just don’t have the energy for it. It’s just hard. It’s hard to make new friends and it’s hard to sustain friendships.”
So, here’s my message to my healthy friends and family:
KEEP INVITING ME!
I have weeks where I can function well, teach my senior fitness classes, do yard work, run errands, and go out to lunch or dinner. Time with others rejuvenates the extrovert in me. If I have limitations or can’t participate in the whole event, I will be honest about that, but I still want to come.
If I miss a few events or family gatherings, call me, text me, or send me a card saying you’re thinking about me, or praying for me. If I’m having a bad day, come and watch a movie with me, bring me cherry pie, or just sit and tell me what’s going on in your life. And if you really want to know how I’m doing, come and listen to me share with you what it takes for me to be functional outside my home.
On the flip side, I have learned that sometimes I need to make a phone call or send a text to check on someone. Or make an effort to accept an invitation for lunch or a time together over dinner. When I wake up feeling achy and so tired, I often push myself to teach my fitness class because I know they are depending on me. It gives me social interaction, and I sometimes feel better after moving my body. God has shown me that when I reach out and care for others in the midst of my own pain, I can take my focus off my own issues and share God’s love and comfort with them.
Just as we want to be invited to be with others, God wants the same from us, to be invited into our lives. The only way to know God better is to spend time with Him. As He enters into our lives, He gives a peace in the midst of chaos, supernatural strength when we have none, and, as the Scripture at the beginning states, directions to get me safely through enemy lines. Our enemy is Lyme or other chronic diseases. When you are in pain, in isolation, in depression, ask God to get you safely through YOUR enemy line–your disease– and He will answer.