Why Some Family and Friends Aren't Supportive After a Lupus Diagnosis
Last updated: October 2023
When I first became sick with lupus, my life changed overnight. Fatigue, pain, and endless doctors’ visits replaced school, my social life, and my plans and dreams for the future. I spent years grieving for my old life and for the person I used to be before I got sick. But of all the difficult and painful things I had to learn, I’d never imagined I would also have to learn that lupus was a journey not all of my family and friends were willing to follow me on.
In thirteen years of living with a chronic illness, here’s what I’ve learned about family members and friends who aren’t supportive of my health issues:
When loved ones are not supportive
A family member’s lack of support says more about them than it does about you.
The first year I spent searching for a diagnosis was one of my hardest years living with lupus. I struggled with debilitating symptoms like extreme fatigue and brain fog, yet all of my blood tests results showed nothing abnormal. Many lupus patients spend years dealing with painful symptoms while remaining undiagnosed.
Unfortunately, some people in our lives might see our lack of a diagnosis as proof that we’re not actually sick. Unless they’ve dealt with a serious illness themselves, most people do not understand how long it might take to find a diagnosis that fits their symptoms.
In addition, seeing a friend or family member seriously ill can unconsciously remind people of their own mortality, leading them to respond to your illness with denial or disbelief. Sometimes, a parent can be so afraid of the idea of their child being sick that they deny their child has a problem, even if the child’s symptoms are obvious.
The light that lupus shines
Your relationship had fault lines that were there all along.
Very few relationships suddenly become abusive after being perfectly healthy. Often, a major life change such as a serious diagnosis doesn’t cause a relationship to become unhealthy. That relationship was already unhealthy, just in a less obvious way.
Maybe the family members or friends who treat you differently since you got sick based their relationship with you on what you were once able to do, not who you are. A friend who stopped calling or texting might have valued you for your ability to stay out late at parties with them rather than taking the time to truly know you as a person. The family member who doesn’t seem to accept your illness was probably someone who also valued you for something external, like your ability to do chores or earn money, rather than for your personality.
Lupus doesn’t ruin relationships. It simply shines a light on the cracks that already existed.
After living with lupus for over a decade, I’ve made peace with my disease. I’ve also had to make peace with the truth that not all of my family and friends will accept that I have a chronic illness.
During the early years of my life with lupus, I was fortunate to have some amazing friends that drove me to doctors’ appointments, made sure I had enough to eat when I was too sick to cook, and most importantly, just listened when I needed them to. Nearly all of these friends are still people I’m close with. It will always be painful when people in my life don’t take my illness seriously. But for every person who isn’t supportive, I’ve learned that there’s someone out there who will be.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?