Living Past Stigma In Your Lupus Battle

Oh, you have lupus? What is that, cancer? I knew someone that had that and she didn’t take all those medications you take. She just ate vegetables and was fine. I remember my aunt’s friend who had lupus and she was so lazy; I mean she didn’t look sick at all. Is lupus even a real disease? Nobody even really knows about it. Oh boy, here they come to try and tell us how she isn’t feeling well with that lupus thing.

Feeling judged

We’ve all heard hurtful statements that play into the stigma of being chronically ill. Many of us have had to hold back tears, clench our teeth, and try not to curse at people who judge us because we have lupus. Sometimes the judgment is explicit and slam-bam in your face. Other times, it may be implicitly hidden behind stupid jokes that use lupus as the punchline.

All in all, that judgment can make you feel less than, and affect your self-worth. It makes it so difficult to explain what lupus is beyond the stigma. In the 2nd Lupus In America survey, 6 in 10 people who took the survey say they feel they always have to explain their condition to many who just don't understand. This could be the case due to the stigma placed on lupus warriors.

What is stigma?

Stigma is a process that usually happens socially that can include exclusion, brush-offs, discrimination, blame, and judgments. It’s disapproval or critical judgment that someone may not be normal or has less worth than those they see as normal. Usually, stigma is directed towards characteristics that aren’t changeable or aren’t easy to change. Stigma is dangerous as it can have an impact on you as a person, your healthcare, even your job.

What can stigma look like?

Other than a butterfly rash, people wouldn’t know from looking at me that I have lupus. To most, I don’t look sick. But, on any given day I may be experiencing joint pain, emotional strain from chronic pain or I may just be fatigued and exhausted. To most, if you look good, they assume you are good. This leads to people coming to their own conclusions and questioning if you are even really ill. As if having lupus wasn’t difficult enough to push through, we’ve all had to deal with the questions and judgments about our health.

Stigma looks like people doubting the reality of you having lupus. It’s blatant sometimes and comes with statements like, you are just making up your symptoms or you are making excuses to avoid taking care of your responsibilities. I've seen stigma when others say or insinuate that your symptoms are your fault by bad choices, by not being spiritually grounded or because there is a demon or curse upon you. Ultimately, we may all face stigma as we battle lupus.  Unfortunately, due to the invisibleness of lupus, we may also be subject to discrimination and stigmatization of all kinds.

Coping with stigma

Since lupus can be invisible, it's hard to believe. Not just by friends and family but by doctors as well. It’s important as lupus warriors to avoid internalizing the stigma messages. This will lower your self-esteem and create feelings of worthlessness in you. Eventually, you can become a victim of self-stigma with negative self-talk and derogatory thoughts. You can cope by connecting with other lupus warriors, becoming an advocate for others, speaking up about stigmas, removing yourself from those who push stigmas on you, and seeking professional help to deal with the emotional stress being a victim of stigma can bring.

Supporting lupus warriors

Lupus, misunderstood and not believed, can be mentally and physically exhausting. Make it a point to spend more time with people who love, understand, and support you and less with those that don’t. For those that don’t have lupus, be aware of the battles, we fight daily. Give your support as you are able to and challenge yourself to remove the assumptions and stigma you place on the lupus warrior in your life.

Have you ever had to deal with stigmatization? Let us know in the comments how you dealt with it and coped with its after-effects.

The Lupus In America 2021 survey was conducted online from February through March of 2021. Of the 836 people who completed the survey, 592 were 50 years or older, 95 percent were women, and 5 percent were men.