Lupus and Toxic Positivity: Understanding the Impact on Patients

For people living with lupus, toxic positivity can impact our lives negatively. Toxic positivity has many definitions. But, overall toxic positivity occurs when encouraging statements are expected to minimize or eliminate painful emotions, creating pressure to be unrealistically optimistic without considering the circumstances of the situation.¹ This can be done with the best of intentions and the person saying it might not even know its harmful.

Lupus is an autoimmune disease with no cure meaning that there is no getting better for us. The unpredictability of when a flare can show up will always keep us on edge and wonder what the next day will bring. Here are some things that I have heard since I was diagnosed with lupus.

When positivity turns toxic

1. “Stay positive”

Easier said than done. The countless times that I have heard family and friends or even my medical care team say this is endless. It’s really hard to stay positive when your body keeps betraying you. Each new day is something different and it just ultimately sucks.

2. “Everything happens for a reason”

I would love to know that reason is. Why did I need to get lupus at 27 when I was feeling on top of the world with a great job and right at the time I had started dating this great guy who is now my husband. Fast forward 6 years later and I get diagnosed with Sjogren's and non-Hodgkins lymphoma. Seriously, what is the reason.

3. “It will all work out”

I’m still questioning this and trying to figure out how the pieces of the puzzles of my life fit together. Being diagnosed with lupus and Sjogren's and non-Hodgkins threw a wrench in my future and I still don’t know what the picture of my future will entail.

4. “Always look on the brighter side”

Dealing with multiple chronic issues, its hard to find the brighter side in this situation. I feel like a dark cloud is always over my shoulder and I don’t know when the sun will shine. It’s hard to juggle it all and I just want to break down.

5. “At least…”

When I first got lupus, many people would say at least it's not cancer. Fast forward to now and I have cancer. Obviously I haven’t heard this phrase as much but comparing illnesses should never be done in the first place.

Why it's harmful

We all have different coping mechanisms and others should not create an environment where lupus patients need to hide their true self. As a lupus warrior, our feelings need to be heard and understood. Our thoughts should not be downplayed or invalidated. Living with a chronic illness just sucks. There is no need to sugar coat that. I wouldn’t wish this on anyone.

As a lupus warrior we should not have to fake it and put on a façade and pretend we are happy. We all have our days when we just want to crawl in a ball and hide from the world and that’s okay. Being positive all the time is not realistic and can be harmful and may prevent lupus warriors have actually seeking the help they need whether physically or mentally.

What actually helps

Even though some may say these things with the best intentions, they need to think twice before they say these phrases. They should educate themselves on our disease so they can understand what we have to undergo day to day.  We all just want support and compassion. We want someone who will listen to us and truly ask how we are and say how can we help or support you. We want someone who will offer to help run errands for us or do the dishes. It’s the little things like that shows us that you really care. By doing this we can provide a more caring environment for all.