This is written in honor of National Invisible Chronic Illness Awareness Week and has been cross-posted to gratitude365.
One of the more heartbreaking aspects of being sick is the change--or the loss of--relationships. I went through this the first time when I became a mom. My relationships with friends without kids changed. I didn’t have as much time to invest in them and they couldn’t always relate to my life. Getting together required advance notice, a negotiation with my husband, or hiring a sitter, so it just started happening less and less.
Then about a year and half ago, after my second son was born, all wheels fell off. I went on a roller coaster of infections, symptoms, and doctors and was finally diagnosed with Chronic Lyme Disease. I started to go through the friendship change again. Not only was I living with a chronic illness, but was also staying home caring for a baby and a preschooler. Getting together with friends was even more complicated. Not just because of logistics, but mostly because I was--and still am--sick and tired. And if I get a break, I want to crawl in bed, go get a massage, or swim a few laps.
So, I did not invest in some relationships like I would have liked over the past year. I’ve just been too overwhelmed with my own life. But frankly, I’m surprised and disappointed with people who I thought would “be there” but aren’t. They might have been at first, but I think over time, there’s an impression--or expectation, maybe--that I should be better by now. Or maybe it’s because I don’t look sick they don’t realize how sick I really am. Or maybe they’re buried in their own overwhelming life and I don’t know it because, like me, they’re pulling off a Ginger Rogers act.
But sometimes I find connection where I least expect it. For example, an old colleague on Facebook, whom I haven’t seen in 10 years, sent me a very kind note after reading about my struggle with Lyme. He shared that his wife has MS. He wrote, “Her symptoms are invisible to the rest of us who, at times, are somewhat insensitive to her private suffering.” I teared up when I read that. He is one of the few who get it.
Lyme has given me my new BFF, Alix. We were acquaintances and Facebook friends, when I posted something about looking for a far infrared sauna. She eerily commented, “Do we have the same thing?” Alix has since then become a huge blessing in my life. She’s the only person in the world I don’t have to explain anything to. We go to each other’s doctor visits and discuss medications, supplements, diet, and body functions ad nauseam. And in the midst of her own suffering, she finds a way to comfort and humor me in a way no one else can.
Of course there’s my four sisters and a couple girlfriends that I’ve known forever who even though they don’t live here, will say they wish they did so they could bring over a meal, take the boys, or go out for a much needed drink (even if it is only green tea). And those relationships haven’t changed, if anything, they grow stronger by the day.
As hard as this has been on my husband, and we’ve had some rough moments (to put it mildly), I’m constantly amazed by his loyalty and capacity to care for me. I’m reminded of our wedding vows: “Loving what I know of you and trusting what I don’t know, I choose to spend my life with you.” Who would have thought we’d be faced with “in sickness” only six years into our life-long commitment. But, as much as this sucks, without Lyme, I wouldn’t have realized how much that gamble has paid off. I can’t imagine facing the future with anyone else.
Sometimes I get really down about not being a very fun mom. I’m fatigued. I’m in constant pain. I’m irritable. I have panic attacks. I let the sitter take them to the park. I let Dad do the roughhousing. And the soccer, baseball, golf, hockey, croquet, or dirt digging in the front yard falls to the neighbor girl to manage (what a blessing she is). I’ve had many teary moments wishing I could go running and giggling with abandon after these active boys. But on the flip side of all this, I think--and hope--that perhaps I’m raising empathetic boys. I’ll never forget the first time Ry asked me, “You fragile, mommy?” And then just this week, while his dad was out of town on business, he says to me, “I’m going to take good care of you Mommy, but I can’t cook.”
And then there’s my own father. We’ve had our differences over the years. And there’s pain there. But my having Lyme disease for whatever reason, has made him come to terms with what he sees as his shortcomings as a father. He has apologized to me, which means more than I can ever write into words. I feel like he’s “seeing me” more than he ever has, and he, along with my mom, is becoming a reliable source of empathy.
My former colleague put it this way referring to his wife's MS: “This new, permanent member of our lives has taught us many things about living. I wish the positive lessons learned could have come through different means, but they have come and we are grateful.” And to that I say: ditto. And I can only add that may I never take these relationships for granted again. While I am not grateful for being chronically ill, I am grateful for the deepening of these bonds, the love I’ve experienced, and new eyes with which to see it all.