Lupus and Domestic Abuse

Content Note: This article describes domestic abuse. If you or a loved one are struggling, consider reading our mental health resources page, contact the National Domestic Violence Hotline at 800-799-7233, or text START to 88788.

Seven years ago, I sat on a couch in a marriage counselor's office. My husband and I had started going to marriage counseling after a severe lupus flare revealed cracks in our relationship we hadn't seen before. But on that day, I sat in the office alone. "But he never hit me," I told the counselor.

She nodded as I leaned back against the beige cushions. "That’s true. But you're acting like a battered woman. This isn't a healthy situation for you," the counselor said.

The stigma of domestic abuse

The idea that I was in an abusive relationship had never occurred to me. I saw myself as a strong feminist and was educated about all the warning signs of spousal abuse. I didn’t think I was the type of woman who could find herself stuck with an abusive man. It took me years to understand that there isn't a type of woman who can or can't be abused. Domestic violence has nothing to do with how strong the victim is and everything to do with how the abuser chooses to act.

The describes domestic violence as this:¹

"...a pattern of behavior in any relationship that is used to gain or maintain power and control over an intimate partner. Abuse is physical, sexual, emotional, economic, or psychological actions or threats of actions that influence another person. This includes any behaviors that frighten, intimidate, terrorize, manipulate, hurt, humiliate, blame, injure, or wound someone. Domestic abuse can happen to anyone of any race, age, sexual orientation, religion, or gender. It can occur within a range of relationships including couples who are married, living together or dating. Domestic violence affects people of all socioeconomic backgrounds and education levels."

Signs of an abusive partner

However, when one person in the relationship has a chronic illness or disability, domestic violence might not look like typical domestic violence, making it harder to recognize. Below are some signs of abuse that chronically ill people, including people with lupus, should be aware of:

Your partner withholds medication or food

If you are severely ill and suffer from mobility issues, you most likely depend on your partner to bring you food, water, or medication. Due to the massive healthcare expense in America, many chronically ill people have real and heartbreaking difficulty affording medications and food. However, a supportive partner never refuses to provide necessary medication that he/she is able to obtain.

Your partner does not take you to the doctor or to the hospital when you need them to

If your partner ignores you when you need medical help, they are being neglectful and are possibly causing severe damage to your health.

Your partner makes you feel indebted or worthless for needing help with your disability

Your partner should never mock you for what your illness prevents you from doing. A supportive partner will never demean you for not being able to do physical activities like going hiking with them or for being unable to work full time.

Your partner demeans you or mocks you when your disease or the medication you take to manage it changes your appearance

"I’m just not attracted to you anymore," my husband told me, with a look of disgust on his face. Over the past year, I'd been pumped full of steroids and immunosuppressants that had saved my life but drastically altered my appearance. I dressed as well as I could despite being in a wheelchair, wore cute hats over my balding head, and rubbed foundation and blush onto cheeks swollen from steroid use. I looked like someone who had survived a severe medical setback because that's exactly who I was. A supportive partner helps you accept your new appearance rather than mocks you.

Your partner withholds money, spends recklessly, or mismanages your disability payments

Like food and medication, money is necessary to survive. A partner who withholds money is likely doing it to control you. Likewise, a supportive partner knows that disability payments are meant to cover medication and living expenses and would never squander them, leaving you vulnerable.

Your partner blames your disease for how they act or feel

When my husband cheated on me while I was sick with a life-threatening brain flare, I was made to feel as if his indiscretions were caused by my illness. A supportive partner takes responsibility for his/her own behavior.

Your partner hurts you sexually or tries to have sex with you when you are too sick

Whether with someone you just met or someone you've been married to for decades, consent is required for healthy sexual intercourse. A partner who has sex with you when you’re too sick to consent or forces themselves on you when sex causes pain is abusing you. No always means no, and being too sick to consent also means no.

Your partner verbally or physically intimidates you when you are too physically weak to leave the house

I spent many afternoons sitting on the couch in the home I shared with my husband, standing over me as he screamed at me, my legs too weak to run. Sometimes, he would punch walls, rip doors off hinges, or break my possessions. I never knew exactly what would trigger his bad moods, and I spent a lot of time and energy tiptoeing around him. As I recovered and grew physically stronger, I would slip out the front door as soon as I heard his car pull into the garage after work, then nurse a coffee at Starbucks until I knew he was in bed.

My story has a happy ending. Two years after my severe lupus flare, I finally became physically strong enough and financially stable enough to leave my marriage. The first week I spent in my new small apartment felt like releasing a deep breath I didn’t know I’d been holding. No angry footsteps stalked through the house. I didn’t have to keep my thoughts and opinions to myself. I felt safe spending time at home rather than sitting at a table at Starbucks for hours until my husband fell asleep. I feel grateful every day that I could get out of my relationship safely, and I know that living in a calm, peaceful environment has helped stabilize my disease.