Hurtful Things People Say to Those With Lupus

People with illness and/or disability, including lupus, have to navigate a world of intentional or unintentional hurtful behavior regarding their health condition. Much of the time this behavior stems from abled people (people without a condition, illness, or disability) lacking an understanding of what the lived experience is for someone with an illness.

Or... in the words of Twitter, this behavior sometimes manifests as #ShitAbledPeopleSay—a hashtag that became popular in July 2016 and was helpful in educating the abled public about how to better treat people with physical, emotional, and/or mental health conditions; or developmental, intellectual, and/or learning disabilities.

The hashtag is a reflection of our ableism, which can be played out verbally, as in #ShitAbledPeopleSay. These interactions are often referred to as "slights" or microaggressions because they don't necessarily result in blatant acts of discrimination in a legal sense, but they are still offensive and hurtful, and they come from ableist and prejudiced mindsets. Because of what these microaggressions communicate, there is actually nothing "micro" about them and they can certainly feel aggressive, and are intrusive and unwelcome.

#ShitAbledPeopleSay reminds us how what we say and do impacts other people. It also reminds us that we need to do better to stop behaving in a way that assumes that life without an illness or a disability is the better, standard, or normal way to live. In an effort to address this ableism, below are some examples of #ShitAbledPeopleSay tweets with a bit of explanation about why each of the statements are problematic, along with suggestions of how to address our ableism.

"I'm getting sick and tired of you not being able to remember things!"

ShitAbledPeopleSay Tweet
@Gwentastrophe Twitter

Brain fog is a real thing that happens with a variety of illnesses. When referring to brain fog caused by lupus, it's called lupus fog.

Lupus fog is typically distressing for the person experiencing it. Lupus fog also includes difficulty thinking clearly and trouble concentrating. It's a symptom of lupus that comes and goes and doesn't tend to progress unless there is an underlying neurological issue.

Instead of criticizing someone for being forgetful, understand that lupus fog is a difficult experience and that the person could use support.

Learn about lupus fog. Ask the person if there is anything you can do to be of assistance. And please be patient. Their forgetfulness is not personal or a sign of being irresponsible or thoughtless. It's a lupus symptom.

"If you go to a support group, do you just like, enable each other's disorders?"

ShitAbledPeopleSay Tweet
@stefkaufman Twitter

Support group is a place where people with lupus go where they don't have to be questioned about their reasons for going to support group!

Going to a support group can help someone move from feeling dangerously isolated to feeling validated, cared for, and understood. In these cases, support group can be life saving. Judging support groups in a flippant and harsh way is degrading to an experience highly valued by many.

Plus, support groups are also excellent for learning more about lupus and finding important lupus-related resources from people within the community.

Instead of asking a question riddled with judgment and misinformation, trust that if someone attends a support group it's with good reason.

Sometimes people with lupus like to bring friends and family members to their groups. It's a way for their loved ones to learn more about lupus and what it's like to live with the disease.

"Awww, you have Lupus?..."

@thedeafpoets Twitter

 ...I have like 10 friends who died horrible deaths from that."

This seems to be a default response, which is perplexing. If someone said to you, "I have breast cancer," would your immediate response be, "I know 10 people who died horrible deaths from that"? Most likely not because you'd like to preserve the feelings of the person you are speaking with who has cancer and wouldn't want to imply that they are going to prematurely die a horrible death.

But in addition, it shows your lack of understanding of lupus. And if you don't understand or know much about lupus, it's best not to say anything at all. Better yet, learn more about it.

"You can't have cerebral palsy and lupus, you have a job..."

ShitAbledPeopleSay Tweet
@dmlaurette Twitter

...It can't be that bad."

Yes, although illness and disability can lead to the inability to work, there are also many people with lupus who can work. However, work environments don't tend to automatically consider the needs of people with health conditions.

For example, people with lupus often struggle with whether or not they should tell their employer they have lupus, and if they do, what will the repercussions be?

Long work hours can trigger or contribute to fatigue or a flare. A building without a working elevator might require a person with limited mobility to take the stairs, which can cause a lot of pain. Or maybe one day they won't be able to get up the stairs at all. The list goes on.

They go to work despite lupus. By making such a statement, you've erased all of the challenges that could come with having lupus and maintaining employment. You've also implied that they are lying or exaggerating about their experiences. Instead, if someone tells you that they have lupus and they want to share their work-related experiences with you, simply listen.

"My sister's friend's aunt had lupus but it was cured by quitting gluten...

ShitAbledPeopleSay Tweet
@theblandau Twitter

...Why don't you do that?"

If you're not a healthcare professional, it's dangerous to give medical advice to someone with a serious medical condition. Also, there is no cure for lupus.

Yes, some health conditions could possibly be fully or partially managed by dietary changes, like type 2 diabetes. But that's not the case with lupus. There is no "lupus diet" or particular way of eating that will "cure" symptoms or put lupus in remission.

That being said, some people do find that they also have Celiac disease (or another condition) in addition to lupus, which also triggers lupus symptoms. This is a discussion that the person with lupus should have with their rheumatologist. They will then undergo testing. They might change their diet to see if it helps. But by no means is lupus going to be cured.

First, take the time to learn about lupus and lupus treatments. Chances are, the unsolicited advice about how to "cure" lupus will disappear.

"I prefer not to take too many medications...

ShitAbledPeopleSay Tweet
@UntoNuggan Twitter

...Me too, but I also like being alive."

Lupus medications often come with unwelcome side effects. People with lupus tend to have a love/hate relationship with lupus treatment.  Despite this, those medications keep them alive. Period.

It's a privilege to flaunt your ability to decide that you don't want to take too many medications. Some people don't have a choice.

It's also dangerous to suggest to someone that they should stop their lupus medication. These suggestions often come from people who don't know much about or understand lupus. 

The person with lupus should discuss with their rheumatologist if they want to change or stop any of their medication, and this should be done before any changes are made. It can be dangerous to stop medication or change dosage without following a specific protocol given by the person's rheumatologist.

"You are NOT your illness."

ShitAbledPeopleSay Tweet
@stefkaufman Twitter

There are actually two schools of thought on this one. One school of thought is, "Yes, lupus is only one part of me, but it does not define me. I am so much more than a person with a disease. I have a personality, experiences, interests, goals, achievements, skills, and more."

The intention is try to prevent people from seeing a person with lupus as only a person with lupus. People with lupus are not one dimensional. Sometimes abled people will lose sight of the humanity of the person with lupus, focusing only on their disease-related struggles and not the person as a whole. And seeing people with illness or disability in a one-dimensional way erases the person they truly are.

The other school of thought is that saying to someone that lupus does not define them ignores the major impact that lupus has on their lives, from everyday experiences to big life decisions. And it implies that defining their life by their illness is bad, wrong, and something to be avoided.

For example, it's a bit cringe-worthy when reading a headline like, "Mike has lupus, but he doesn't let it define him! He just climbed Mount Everest!" Headlines like these are patronizing. They read as if people with lupus or any other illness are incapable of achieving great things, which of course is not the case.

These headlines also imply that people with lupus who do not climb Mount Everest (or some other extreme achievement) are disabled people of lesser quality.

Or it implies blame, that they are allowing lupus to get the best of them, and people with lupus are never allowed to have days where they feel overwhelmed by the disease. These headlines also imply that people who do define themselves by their illness are wrong for doing so.

Lastly, it's particularly inappropriate to tell someone, "Don't let your illness define you" if you are offering unsolicited advice. You're directly telling someone what they should or should not do without enough understanding of the disease to legitimately be giving advice. It assumes that you know more than they do about their own condition. You do not.

Learn More About Lupus to Stop Ableism

Everyone with lupus or a chronic illness or a disability is different. We all have different opinions. What one person might find offensive, another person might not. But there are still things that are generally offensive and show a lack of understanding about lupus. If you're not sure if something you've said or are about to say is offensive, look it up online. But also think outside of your abled experience, "How would this come across? What are the implications that I'm not intending? How is this ableist?" Read through the #ShitAbledPeopleSay tweets. If you come across one that reminds you of what you've said, don't get defensive. It's not about your feelings in this case. It's about the feelings of the people you might have accidentally hurt. The solution is to stop saying these things when you learn about them. If possible, apologize to the person in your life with lupus. It will go a long way. It shows that you care about them and that you put an effort into understanding their experiences. It shows how much you want to stop ableism. And understand that we have been raised in an ableist society that has lacked understanding of illness and disability so we're all going to fall into these traps at some point. None of us are perfect. Learn more about lupus. Learn more about ableism and read works by people with disabilities. The internet is filled with amazing essays about ableism, disability rights and advocacy, and related topics. You, your loved one, and our world as a whole will be better because of these efforts.