Hiding in Plain Sight: MS and Domestic Violence and Abuse

For Helen Ford, MD, MBChB Hons, FRCP, a multiple sclerosis (MS) specialist in England, it was the COVID-19 lockdowns that made her realize how vulnerable her patients with MS were to domestic violence and abuse (DVA). In the United Kingdom, as in many countries, people were encouraged to stay home to slow the spread of the virus. But for some of Ford’s patients, already in controlling relationships, staying home meant increased misery as their perpetrators/partners used the restrictions to intensify their abuse.

One of her patients—whom we will call Anna—was largely confined to her bedroom because of her MS. With her son unable to visit, her husband’s coercive behavior intensified. He took away Anna’s iPad so she could not communicate with her son or anyone else. Another patient’s partner removed her walking aid.

Ford also could not forget the case of a young woman with active MS. Ford was anxious to get her started on a disease-modifying treatment (DMT) after 2 relapses. But during lockdown, she seemingly disappeared. After months of searching, an MS nurse found her living with her baby in a women’s shelter, where she had fled after escaping her violent partner.

Ford praised the MS nurse’s tenacity. She also wondered, “Say we had given up? As health care professionals, don’t we have a duty of care to all our patients with MS? Don’t we want equal treatment for all?”

“Intimate Terrorism”

Ford was not the only MS specialist troubled. During a conversation with colleagues Nikos Evangelou, MD, PhD, a professor of neurology at the University of Nottingham; and Klaus Schmierer, PhD, MBBS, FRCP, a professor of neurology at Queen Mary University of London, they also voiced concerns about the “intimate terrorism” to which their patients with MS were being subjected.

This included physical, sexual, financial, and emotional mistreatment, as well as their perpetrators removing batteries from wheelchairs or withholding medications. They also learned that the abusers, often partners but sometimes family members or paid carers, were more likely to humiliate their victims about their disability, saying things like “you’re useless” and using their MS to undermine them (SIDEBAR).

SIDEBAR: A Survivor’s Story

Editor's note: The following is an account from an anonymous patient submitted to the authors for use in this article.

I wanted to use my own name, but my therapist and neurologist thought it was still too dangerous.

So many people think domestic abuse only happens to people who are not well educated or are poor. It is not true. I have a master’s degree. I worked for a huge US multinational corporation, running a team of 25 people. It still happened to me.

In 2012, I married Jeff (not his real name). He was very caring, but it was like a light switch flipped after we were married. He started drinking excessively. Three months later, I was diagnosed with multiple sclerosis (MS) after 5 years of seeing doctors about strange symptoms.

After a while, I had to take medical retirement due to my MS. That was when I realized how isolated I was. If I wanted to make a phone call, he would appear and stand over me while I made it. If I got home half an hour later than I said, he would be waiting by the door and demand, “Why were you late? Who were you with?”

He was never physically violent. Instead, he would yank my ponytail, put his face inches away from mine, and scream at me. He used to clean his guns in front of me

My MS was getting worse. I am sure part of it was due to the stress. I remember once I was on the floor vomiting. I begged him to call my mother. He stood over me, called my mother, had a chatty conversation, then hung up.

One weekend, he ordered me to go away with him. It was so awful. I remember lying perfectly still in bed at night, convinced he was going to kill me. When I got back home, I was lying on the bed, exhausted. That was when I heard a voice say, “Get out.”

Jeff said he was going out. I asked if he could leave me my car as I had to pick up a prescription (a lie). Finally, he agreed and left. I grabbed my bag and went to a friend’s. For 3 days, I stayed curled up in a ball.

I told my neuropsychologist, who had long suspected the abuse. He and the hospital where I get my MS treatment have been brilliant. They saved my life. I am much better now. I have had to learn to listen to my body again. I had to learn to trust my inner voice.

Like Ford, they were also surprised at how little research had been done on this complex issue. For example, few studies exist on the prevalence of domestic abuse or its impact on MS clinical outcomes. Nor was there guidance for clinicians on how to detect and respond to abuse—in stark contrast, for instance, to conversations around family planning involving women with MS.

At the same time, Rachel Horne, a journalist with MS, was reading about the worldwide surge in domestic violence during the lockdowns. She was interested to know how this was impacting people with MS. She had assumed disability was a protective factor against abuse but quickly realized she was wrong. According to the UK’s Office for National Statistics in the year ending March 2019, disabled women were more than twice as likely (17.3%) to experience domestic abuse than non-disabled women (7%).¹

Why Does This Happen?

There are myriad reasons for the abuse, Horne learned. Persons with disabilities may be less able to defend themselves, and the risk of harm is increased as they often depend on their perpetrators for care. Such isolation means they have fewer people to confide in or go to for support. In addition, the abuser may insist on being present at all medical and social care appointments, making it difficult for the victim to disclose any mistreatment. Finally, if children are involved, the abuser can use this to threaten and keep the victim under control.

Another overwhelming point could not be ignored. Although all people are at risk of experiencing DVA, women are much more likely to bear the brunt of it.² At the same time, research has shown MS is 3 times more common in women vs men and is most prevalent in women of childbearing age.³

Research Initiative

Ford, Evangelou, and Horne all agreed this was a complex issue, likely more common than initially thought. They also realized more research was needed; anecdotes were not enough.

The best way forward, they decided, was to set up the MS Domestic Violence and Abuse Research Initiative at the University of Leeds.⁴ The project’s aim would be 2-fold: to find out the prevalence of DVA among people with MS and to create a tool kit for MS health care professionals that would allow them to recognize and support those experiencing it. The initiative was to be funded by Horne’s family foundation, which supports research into MS, including the Rachel Horne Prize for Women’s Research in MS.

In the first phase, 2 PhD students will receive grants to gather and analyze data. Kharis Hutchison, MS, a PhD candidate based at the University of Leeds, would examine the experiences and support needs of women with MS who had experienced DVA. At the University of Nottingham, Suzanne Britt, MSc, BMedSci, BA, RM, another PhD candidate, would explore the views and perspectives of health care professionals, aiming to identify gaps and opportunities in current practices. Building on these insights, a postdoctoral research fellow, Shruthi Venkatachalam, PhD, MPhil, MA, would create a tool kit for health care practitioners to safely identify, support, and refer patients with MS experiencing DVA.

Next Steps

Fast-forward to today. Hutchison is writing her thesis. She initially had difficulty finding survivors of abuse who were willing to speak to her. Many were too scared. So, she designed a poster about the study with a QR code linked to her contact information. She put it on the back of the bathroom door in the Neurology Day Case Unit at Leeds General Infirmary that patients with MS used during their DMT infusions. Two people contacted her that way.

Britt is finishing her research while Venkatachalam is assembling the tool kit. At the same time, the team has been heartened by growing awareness of the issue. Britt recently was featured in a 2-part interview by International Journal of MS Care editor Erin E. Gyomber with Elizabeth Morrison-Banks, MD, MSEd,^5,6 to discuss Morrison-Banks’ award-winning paper, which looked at caregiver mistreatment experienced by those with advanced MS.⁷

The UK charity MS Trust is running a seminar on this issue at its annual conference in March 2025. In 2023, Britt presented a poster on it.⁹ Horne has been in touch with neurologists, social workers, and a psychiatrist—from countries including Australia, India, Canada, and Iran—who are eager to work together.

Domestic abuse is a horrendous crime. It can also cause long-lasting physical and mental harm to people with MS. It appears to be more common than previously thought. Let us stand together to improve services and support for people who have been affected by MS and domestic abuse.

Hiding in Plain Sight: MS and Domestic Violence and Abuse

Key Takeaways

“Intimate Terrorism”

SIDEBAR: A Survivor’s Story

Editor's note: The following is an account from an anonymous patient submitted to the authors for use in this article.

I wanted to use my own name, but my therapist and neurologist thought it was still too dangerous.

So many people think domestic abuse only happens to people who are not well educated or are poor. It is not true. I have a master’s degree. I worked for a huge US multinational corporation, running a team of 25 people. It still happened to me.

In 2012, I married Jeff (not his real name). He was very caring, but it was like a light switch flipped after we were married. He started drinking excessively. Three months later, I was diagnosed with multiple sclerosis (MS) after 5 years of seeing doctors about strange symptoms.

He was never physically violent. Instead, he would yank my ponytail, put his face inches away from mine, and scream at me. He used to clean his guns in front of me

My MS was getting worse. I am sure part of it was due to the stress. I remember once I was on the floor vomiting. I begged him to call my mother. He stood over me, called my mother, had a chatty conversation, then hung up.

One weekend, he ordered me to go away with him. It was so awful. I remember lying perfectly still in bed at night, convinced he was going to kill me. When I got back home, I was lying on the bed, exhausted. That was when I heard a voice say, “Get out.”

Jeff said he was going out. I asked if he could leave me my car as I had to pick up a prescription (a lie). Finally, he agreed and left. I grabbed my bag and went to a friend’s. For 3 days, I stayed curled up in a ball.

I told my neuropsychologist, who had long suspected the abuse. He and the hospital where I get my MS treatment have been brilliant. They saved my life. I am much better now. I have had to learn to listen to my body again. I had to learn to trust my inner voice.

Why Does This Happen?

Research Initiative

Next Steps

FURTHER VIEWING
Ford, Hutchison, and Britt participated in a May 14, 2024, webinar on MS and domestic violence. Click below to check out the program from the MS Academy, which was put together by the Neurology Academy.

Hiding in Plain Sight: MS and Domestic Violence and Abuse

Key Takeaways

“Intimate Terrorism”

SIDEBAR: A Survivor’s Story

Editor's note: The following is an account from an anonymous patient submitted to the authors for use in this article.

I wanted to use my own name, but my therapist and neurologist thought it was still too dangerous.

So many people think domestic abuse only happens to people who are not well educated or are poor. It is not true. I have a master’s degree. I worked for a huge US multinational corporation, running a team of 25 people. It still happened to me.

In 2012, I married Jeff (not his real name). He was very caring, but it was like a light switch flipped after we were married. He started drinking excessively. Three months later, I was diagnosed with multiple sclerosis (MS) after 5 years of seeing doctors about strange symptoms.

He was never physically violent. Instead, he would yank my ponytail, put his face inches away from mine, and scream at me. He used to clean his guns in front of me

My MS was getting worse. I am sure part of it was due to the stress. I remember once I was on the floor vomiting. I begged him to call my mother. He stood over me, called my mother, had a chatty conversation, then hung up.

One weekend, he ordered me to go away with him. It was so awful. I remember lying perfectly still in bed at night, convinced he was going to kill me. When I got back home, I was lying on the bed, exhausted. That was when I heard a voice say, “Get out.”

Jeff said he was going out. I asked if he could leave me my car as I had to pick up a prescription (a lie). Finally, he agreed and left. I grabbed my bag and went to a friend’s. For 3 days, I stayed curled up in a ball.

I told my neuropsychologist, who had long suspected the abuse. He and the hospital where I get my MS treatment have been brilliant. They saved my life. I am much better now. I have had to learn to listen to my body again. I had to learn to trust my inner voice.

Why Does This Happen?

Research Initiative

Next Steps

FURTHER VIEWINGFord, Hutchison, and Britt participated in a May 14, 2024, webinar on MS and domestic violence. Click below to check out the program from the MS Academy, which was put together by the Neurology Academy.

FURTHER VIEWING
Ford, Hutchison, and Britt participated in a May 14, 2024, webinar on MS and domestic violence. Click below to check out the program from the MS Academy, which was put together by the Neurology Academy.