Losing Friends and Family Because of Lupus

One of my most painful days with lupus wasn’t a day when my joints were swollen or when my fatigue was overwhelming. It wasn’t even when I was bedridden with brain inflammation. It was the day a family member invited me on a shopping trip, then repeatedly pushed me past my physical limits.

Four years after I first got sick, I still had a lot to learn about managing my disease. I hadn’t yet learned the patterns of my chronic fatigue. Which is why I said yes when my family member told me she’d pick me up at my house early in the morning, a time of day when my fatigue is at its most severe, for a day at the mall.

Too sick to function

I began the day dealing with bad fatigue and nausea. On the drive to the mall, I repeatedly told my family member to pull the car over because I was feeling dizzy and light-headed and needed food immediately. She ignored me, even when I pointed out restaurants where we could stop.

Throughout the course of the day, she walked at a faster pace than I could keep up with, refused to acknowledge that I was feeling sick, and told me she wasn’t done shopping when I explained that I was too sick to function and needed her to bring me home.

Someone else's wants before my needs

In the days before Uber became ubiquitous, I was stuck in what became a dangerous situation with someone who had no empathy for my illness. After she finally dropped me off at home, I collapsed and was sick for the next three days. And even though I had been conditioned all my life to trust my family, I knew I could no longer trust her.

During that trip to the mall, my relationship with her became clear to me. Her wants would always come before my needs.

It took me years to realize I was not alone in struggling with relationships that fractured under the weight of my disease. While losing family and friends who choose not to understand or accept my physical limitations is a deeply painful experience, it’s not an uncommon one. I’ve since learned to spend time only with loved ones who are understanding of my physical limitations and who listen when I tell them what my needs are.

Signs of a safe and healthy relationship

Since becoming sick with lupus, I’ve had to relearn what healthy relationships with friends and family look like. Here are some signs that a friendly or familial relationship is safe:

They listen when I say I need to sit down, eat, or rest

Because I have to sleep more than most regular people, my time is limited. I have to cram work, cooking and household chores, and the many things I have to do each day to keep my body healthy (like resting frequently, eating healthy, and exercising) into a day. While a "normal" person my age most likely won’t need to sit down after walking across a parking lot, the family and friends I feel safe spending time with understand that I do. They also understand when I’m not able to get up early in the morning, and they understand when I need to stop for food, even if I just ate an hour or two ago.

I feel comfortable talking about my disease with them

The family member on that disastrous trip to the mall never wanted to hear about my illness. When I tried to talk about my symptoms or my disease, she’d frequently smirk as if I was whining or exaggerating my symptoms, when in fact I was often downplaying them. It took me years to understand that her actions had nothing to do with me and everything to do with her immaturity and need to be the center of attention. When I feel comfortable talking to a friend or family member about how my disease affects me or mentioning in casual conversation that I’m having a rough day, I know I’m with someone I can trust.

They never mock me for my limitations

Dealing with a chronic illness has resulted in a sense of humor that can be dark sometimes. A true friend might share my sense of humor, and I love it when friends crack the occasional lupus joke. However, their jokes are never at my expense. The family members and friends I trust never make fun of what I’m not physically able to do.

I can talk to them when I'm in a severe flare

During some of my serious flares, a few people in my life drifted away. While this was deeply hurtful at first, I eventually realized that their actions had nothing to do with me; they were simply showing me their character. I’m thankful everyday that I have friends who have stuck with me through my worst days with lupus.

Respecting my body's limitations

Losing the people in my life who couldn’t adjust to my disease had a silver lining: My health immediately improved when I stopped spending time with people who couldn’t or wouldn’t accept my illness. I have to be careful every day to respect the limitations of what my body can do. For me, that means only maintaining relationships with people who improve my health rather than damage it.