3 lessons I’ve learned as a lupus warrior—and a lupus mom

In an unanticipated twist of fate, my eldest daughter, Ahnna, and I share a bond neither of us ever wished for: lupus. This chronic, incurable autoimmune disease has cast a long shadow over our health and the lives we had envisioned. While the guilt of passing it on lingers for me, I am a firm believer that my quest with lupus has a purpose—to guide and support Ahnna through this arduous path.

Lupus, despite its wide-reaching impact, remains relatively unknown to the general public. In the US alone, 1.5 million people grapple with this condition, and alarmingly, 90% of them are women. Lupus is an autoimmune disease that sends the immune system on a misguided mission to attack healthy cells, organs and tissues. Just as snowflakes are unique, so are the symptoms of lupus, which can include extreme fatigue, joint pain, mouth or nose ulcers, fevers, hair loss and much more. Severe cases can result in organ failure, increased risks of heart attacks, strokes, cancer, and, in some instances, even death.

Being both a lupus warrior and a parent to a child with a chronic disease has given me a unique perspective on how to support our loved ones in their battles, especially when the challenges are invisible. Here are three invaluable lessons I’ve learned along the way.

3 ways to support loved ones with chronic disease 

1. Ditch that toxic positivity

When your loved one is in pain, you’d do anything to lessen their suffering. But a funny thing happens when we feel helpless in others’ misery. We want that person to look on the bright side because if they just thought this way, surely, they’d feel better, right? So you offer up well-intended platitudes, like “hang in there” or “just be positive” in hopes that this improves their outlook. I get that these words are meant to be hopeful and optimistic, but they can come off as alienating and callous to the person suffering.

The reality is that you can’t heal them, nor will you ever really know how they feel. Even if you can’t help them feel better, you can always help them feel seen and heard. Your loved ones want to know you are on their side. While it may be uncomfy, allow them to share what’s going on without needing to supply a solution. Accept their reality as the truth. This means that you can remove those toxic positivity phrases from your vocabulary and work on being OK with whatever comes up.

2. Listen to learn

In today’s fast-paced world, great listening has become a rarity. To support your loved ones, especially those in pain, active listening is crucial. The simple way to show you care is to seal those lips and listen to learn. But this is a challenge because our instincts tell us to say something helpful by giving advice, asking a bunch of questions, or helping them look at things differently (reread #1 above if you want to do this).

The best way to show up for them is to just be there to listen. To help with this, put away anything distracting, like your phone. Look directly into their eyes and be curious about what’s being said. Finally, wait for your loved one to be finished speaking before replying back. This is tough, I know, but just takes practice.

When speaking, ask questions that show comfort and compassion, like, “How are you doing today?” or “Do you want to talk through ideas, or do you want me to just listen?” These questions allow your loved one to decide whether they need to be heard or seek advice.

3. Take care of you

When a family member grapples with a chronic illness, it places a collective burden on the entire family. Moms, in particular, often carry the heavy weight of caring for their families and themselves. In our quest to ensure the well-being of our loved ones, we too often sacrifice our health. It’s time to prioritize taking care of you with self-care. It is not a luxury; it’s an absolute necessity for ensuring your well-being and, in turn, your family’s.

Think of self-care like a salad—sure, not the most exciting option, but essential for a healthy and fulfilling life. Sometimes, you need that extra serving of ranch dressing to make it more enjoyable. Self-care is about nurturing your mind, body and spirit to create a harmonious place within yourself. Prioritizing your own well-being may seem selfish, but it’s a win-win for both you and your family. By taking care of yourself, you become physically and mentally more available to provide support.

Taking care of you goes beyond superficial fixes, like a long bath or a solo Target run; it involves addressing the root causes of stress, learning healthy ways to soothe yourself, and making choices aligned with your values. It’s about taming your inner critic, understanding your emotions and embracing your authentic self.

When dealing with lupus or another chronic condition, family and close friends become your support squad. With their love and compassion, they offer up some hope, laughter and strength against the challenges faced. For them to listen without judgment, give comfort in tough times, and celebrate the wins with enthusiasm means everything. There’s no doubt that without them, life would be much harder. Their presence reminds you that you don’t battle the unpredictability of illness alone.