Domestic violence and abuse (DVA) is a silent crisis affecting millions worldwide – but what happens when a chronic illness like multiple sclerosis is part of the equation? Living with MS brings unique challenges, from mobility issues to cognitive changes that can make recognizing and escaping abusive situations even more difficult. Research on the intersection of MS and domestic violence is still in its infancy, but a team from the universities of Leeds and Nottingham is working to change that.
In the interview, I talk to Sue Britt, a chartered midwife, lecturer, and researcher at the University of Nottingham who is part of the study team, about how healthcare professionals respond to domestic violence and abuse in people with MS. With her background as a midwife and strong commitment to patient care, Sue sheds light on why people with MS—especially women—may face a higher risk of abuse, the warning signs to watch for, and how healthcare professionals can provide better support.
If you or a loved one has MS and is concerned about domestic violence, this article provides insight, resources, and practical steps for seeking help. It is time to break the silence, raise awareness, and create meaningful change in the MS community.
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More InformationTable of Contents
Introduction – Who is Sue Britt?
I am Sue. I’m actually a registered midwife by background and have a career in midwifery both as a clinical practitioner and a lecturer. Since 2022, I’ve been a full-time student at Nottingham University, where I’m exploring professional responses to domestic violence and abuse in people with MS.
I’m married to Dave, we have three dogs Maxx, Jess and Pippa. Because I have three dogs, I enjoy walking and hiking, but I’m also very active in the gym. One fact about me that your listeners might find interesting is that my first degree was in German! I’ve also lived in Germany in the past and worked at the University of Erlangen as a Lektorin.
Personal motivation for your career choice?
As I said, my first career was in languages, but I trained as a midwife later on. I chose to get involved in this research because of my teaching and my student support roles at Nottingham University. The issue of domestic abuse is very important for midwives because of the increased risks of abuse during pregnancy, so I developed some expertise in that field. It was then really interesting for me to extend that interest to a new field, MS-care. It’s been fascinating learning about MS and bringing my previous knowledge into MS research.
Understanding the Issue of Domestic Violence and Abuse (DVA) in MS
Can you explain what domestic violence and abuse (DVA) means, and how it might uniquely affect people with multiple sclerosis?
When we talk about domestic violence and abuse, there are a few things to think about. Firstly, it can be called different things in different settings and that can be confusing at times. For example, you will see it called intimate partner violence or intimate partner abuse in some countries, occasionally you will see it called spousal abuse, some US studies refer to battering. In my setting in the UK, we tend to use the term domestic abuse because we have a parliamentary act called the Domestic Abuse Act which goes some way to defining what we mean by the term. So, I think the most common definition is any incident or pattern of incidents of controlling, coercive or threatening behaviour, violence or abuse between a victim and their perpetrator regardless of gender or sexuality. This can encompass – but is not limited to – psychological, physical, sexual, financial, and emotional abuse. Domestic abuse can be perpetrated by a partner or ex-partner, family member, or carer.
Secondly, I think that what is important in that definition is that this isn’t just about physical violence, hitting or punching. It’s about other kinds of abuse that aim to frighten, threaten, intimidate and isolate people. And in our setting, we also recognise that it might be other people perpetrating the abuse, other family members in that domestic setting, ex-partners extremely important. The other thing to mention here is that we know that children are affected very badly by domestic abuse and that harm may even start during pregnancy.
Why are people with MS, especially women, at a higher risk of experiencing domestic violence and abuse (DVA)?
The surprising thing when we come to look at answering this question is the fact that there has been so little research on this issue in MS, so in some ways we are just at the beginning of finding an answer to the question. I can only really report what the wider literature has to say about this issue and then refer to the work that we have been doing in the MS-DVA project. When I asked my study participants – most of whom were MS specialists – if they felt that people with MS were at greater risk, they felt that there were a couple of issues.
The first one was that MS affects so many parts of people’s lives and that some of those things intersect with the risks of abuse; we could mention how relationships might be affected, how someone might feel that they have to put up with abusive behaviour because they are frightened to be left alone. We could mention how employment and financial health might be compromised by MS, something which could add strain to a relationship. We could mention fatigue and how partners might not be willing to accept the adjustments that someone with MS might have to make, perhaps calling them names or withholding money. The other thing that many of my participants mentioned was how cognitive changes might make this problem worse for someone with MS, possibly leading to someone being labelled as “stupid” or putting them at risk of something called “gaslighting” where an abuser denies that they have done or said something by casting doubt on their ability to remember something. My colleague Kharis in Leeds found that the women she interviewed had definitely experienced this and felt that their cognition made them doubt themselves further.
The thing about MS, of course, is that it has a really variable course. So, the other side to this issue is the potential for increasing disability as the disease may progress. We know from other studies around disability that impairments can place people at risk of abuse and violence, also that disabled people may be subject to specific types of abuse, for example, having their medication withheld, name calling linked to impairments, denying access to healthcare or other types of support. So, people with advanced MS may face some of these things as well.
We know that women are on the whole more likely to experience abuse than men and this links of course to the fact there are still deep-rooted imbalances in our society, that violence and abuse against women and young girls is on the rise across the globe. We also know that MS affects more women than men and so some of these trends have a particular relevance for the MS community. MS gives healthcare professionals many opportunities to interface with issues of women’s health (pregnancy, menopause etc.) and an issue like domestic violence and abuse that affects physical, emotional and social health could be part of that interface. Having said all that, I do think it is important to acknowledge that a person of any gender who is living with a long-term health condition may be more likely to experience domestic violence and abuse, and that is certainly something that the professionals in my study were at pains to point out.
What are some of the warning signs of domestic violence and abuse (DVA) that people with MS or their loved ones should look out for?
In many ways the signs are the same for people with MS are the same as for others; it is actually really difficult for people who are being abused to see some of the signs because most abuse is a gradual process. It often isn’t a question of someone using physical force, although that may happen of course, but rather an environment characterized by control and coercion, designed to isolate the person from friends, family and other support sources. Some of the things you could look out for might be:
- Their partner insults them in front of other people
- They’re always worried about making their partner angry
- Their partner is extremely jealous or possessive
- Their partner seems to make all the decisions
- Their partner accuses them of flirting or having affairs
- Their partner controls the finances and they have to account for everything they spend
- Their partner may be jealous of the attention given to children or even pets
- Their partner is constantly calling, texting or messaging – keeping tabs on where they are, who they’re with and what they’re doing. In some case they may use tracking apps (the person may say that they always seem to know where they are)
- They have unexplained marks, bruises or other injuries, might have frequent accidents or falls. They wear clothing–to conceal their physical injuries
- They’ve stopped spending time with friends and family
- They have low self-esteem or are overly apologetic
- They’re depressed or anxious – or you’ve notice changes in their personality. Has your usually cheerful and outgoing friend become quiet, withdrawn or distant lately?
- They may have started cancelling activities at the last minute or making up excuses for not being able to meet up? It could be a sign that their partner is becoming increasingly controlling about where they go and who they see
- They complain that their partner is “moody” or has a bad temper. They might not use the term “abuse,” but anger, aggression and violence are signs of domestic abuse.
The Connection Between MS and domestic violence and abuse (DVA)
How can the symptoms of MS, such as fatigue or mobility challenges, make it harder for people to recognize or escape abusive situations?
You can see from the list that we looked at earlier that it can be really complex to distinguish the effects of domestic violence and abuse from some of the things that people with MS may experience when living with MS. For example, if we look at a partner making all the decisions, you might argue that that partner is being supportive, even kind if he/she chooses to take charge of finances. In terms of falls/bruises, how do professionals, friends, family recognize signs when they might be explained by the person’s MS? So, I think it is definitely something that makes it very complicated. And one thing that I’ve heard a lot in my study is that professionals are often told by people with MS that they know that the behaviour is not right, but that they feel that they can’t “rock the boat”, they don’t feel able to leave the situation because they feel dependent on their partner. Also – and I don’t think this can be overestimated – they may have children, a home with that person. Leaving can feel very frightening for that person.
Why do you think domestic violence and abuse (DVA) among MS patients has been overlooked in healthcare discussions until now?
I don’t really know the answer to that question, if I’m honest. It may be that MS care and MS research has rightly focused on treatments, causes etc. and that an issue like this hasn’t felt relevant before now. It may be that there is a growing expectation that the care of people with MS needs to be much more holistic going forward, so that issues affecting quality of life, mental, social and emotional health need to be part of that comprehensive assessment. I think some of the professionals I spoke to have been doing this and talking about this for a while, so the value of the research group is also in bringing the conversations that are already happening out into the open.
How does domestic violence and abuse impact the physical and emotional health of MS patients differently than those without a chronic illness?
DVA has profound impacts on the physical and emotional health of everyone who experiences it and on the children who witness it/live with it. Indeed, one of the areas that is being looked at in other countries, I believe, is whether there is a link between brain injury and MS, also whether there might even be a connection between what we called adverse childhood experiences (ACEs) such as abuse and the development of MS. So that is fascinating work that really interests me as a midwife! But in answer to your question, there is lots of evidence that living with abuse increases the risks of depression, anxiety and even suicidality. These are things that are also affected by living with MS, so we can see an amplification if you like. I’ve been to many conferences where the effects of stress on the course of MS have been spoken about, so it seems reasonable to propose that the chronic stress experienced by someone living with domestic violence and abuse may affect their MS too. One of my practitioners told me a story about a newly diagnosed MS patient who was living in a very abusive and chaotic environment, who was unable to start on a treatment programme because she couldn’t attend for bloods or monitoring. This patient’s safety needed to be prioritized so that she could start on a disease modifying therapy. I think she said something to her like “we need to sort this, and we can see what your MS is”. I think that is such a powerful story. And I know that my colleague in Leeds found this in her work as well.
Seeking Help and Support
If someone with MS suspects they are experiencing domestic violence and abuse (DVA), where should they start to seek help?
It’s important to say from the start that it can be really difficult for people to recognize that they are experiencing domestic violence or abuse, especially in situations where there might not be physical harm. Abuse often develops gradually and eats away at the person’s self-esteem and confidence, so it can go unrecognized for many years. In some cases, other people may be the ones to ask if you’re OK. However, it is probably fair to say that if you are feeling scared or isolated, or that someone is using your MS as an excuse to hurt you or as a means of controlling you or stopping you from doing something, then something is not right. In terms of finding help, it is important to speak to someone who will believe you and who you can trust. This may be a close friend or family member, or it may be a professional or support organization.
What role can healthcare professionals, such as neurologists or MS nurses, play in identifying and supporting MS patients who might be experiencing domestic violence and abuse (DVA)?
There has been quite a lot of research to suggest that people are more likely to tell healthcare providers about abuse because they see them as being there to help them with other things such as their MS, and so they are in a position of trust. They are also seen as less authoritarian than say the Police or even a social worker. So, it’s important that professionals know about DVA, the signs and red flags so-to-speak, but that they are also able to ask about DVA when they feel it might be happening. There are lots of resources that suggest the kind of questions that professionals can ask, but a couple of things are important to add here. Firstly, if a professional is going to ask about abuse, they should always ask the person when they are on their own. This might mean creating some kind of opportunity to get them on their own (Bloods, weighing, taking them into a separate room), but it is dangerous to ask them when someone is present, even if that person is a “friend” or even an older child. Secondly, professionals should never tell someone who is in an abusive relationship to leave. We know that the risks of physical attacks and even homicide increase around the time when someone decides to leave a relationship, so for professionals it is about helping the person to find further support. For us in the UK that would be speaking to our colleagues in safeguarding or helping the person to reach out to a charity or support organization. The WHO has quite a nice acronym for professionals:
LIVES
- Listen
- Inquire
- Vaildate
- Enhance Safety and
- Support
Are there specific organizations, hotlines, or resources available to people with disabilities, including MS, who are experiencing abuse?
- I can only really speak about my own country here and it would be good to know what is available in Germany for example. We have national organisations such as Women’s Aid, but a lot of local areas will have local support helplines that can be contacted for support. Some of our charities like the MS-Trust or the MS-Society also have helplines that can offer specific support to people with MS and can even make referrals through for further support if necessary.
- https://www.
nationaldahelpline.org.uk/ - https://www.womensaid.org.uk/
(women and girls) - https://mankind.org.uk/ (men)
- https://galop.org.uk/get-help/
(LGBT+) - https://respectphoneline.org.
uk/ (help for perpetrators)
Can I ask what you have in Germany?
- Hilfetelefon „Gewalt gegen Frauen“: Unter der Nummer 116 016 erhalten Frauen, die Gewalt erlebt haben oder noch erleben, rund um die Uhr und anonym Unterstützung. Das Angebot ist kostenlos und in 18 Sprachen verfügbar.
- Hilfetelefon „Gewalt an Männern“: Bundesweites Beratungsangebot für Männer, die Gewalt erfahren haben oder noch erleben. Unter der kostenfreien Nummer 0800 123 99 00 erhalten Betroffene anonym und vertraulich Unterstützung. Die telefonische Beratung ist erreichbar:
- Montag bis Donnerstag: 8:00 – 20:00 Uhr
- Freitag: 8:00 – 15:00 Uhr
Österreich:
Frauenhelpline gegen Gewalt: Unter der Nummer 0800 222 555 bietet die Frauenhelpline rund um die Uhr anonyme und kostenlose Beratung für Frauen, die von Gewalt betroffen sind.
Männernotruf: Männer, die Gewalt erfahren oder ausüben, können unter 0800 246 247 Unterstützung erhalten.
Schweiz:
Opferhilfe Schweiz: Die Opferhilfe unterstützt Betroffene von häuslicher Gewalt mit Beratung und weiteren Hilfsangeboten. Eine Übersicht der regionalen Beratungsstellen finden Sie auf ihrer Website.
- Violencequefaire.ch: Diese Plattform ermöglicht es Betroffenen, anonym Fragen zu stellen und erhält persönliche Antworten von Fachleuten aus der Gewaltberatung.
The Role of Research in Adressing domestic violence and abuse (DVA) in MS
How is the MS Domestic Violence and Abuse (DVA) Research Initiative helping to shed light on the experiences of MS patients facing DVA?
The research initiative has really started to life the gaze on this issue, I hope. We have had 2 PhD studies, one in Leeds and one in Nottingham. The study in Leeds has been led by my colleague Kharis Hutchison, who has interviewed women with MS who have experienced (or are still experiencing) DVA. My own study has explored how professionals see their role in responding to this issue in people with MS, so very exploratory and not necessarily based on direct experiences. Kharis’ and my work will conclude this year and we now have a postdoctoral fellow Shruthi Venkatachalam who is designing a toolkit for healthcare practice as a resource to support DVA in people with MS. Ultimately, the toolkit wants to provide professionals with a resource to inform their practice in this area, support them in identifying DVA and assist them in working out next steps in terms of who they can turn to as professionals and how the person with MS can access further help. It is still very much in development, but those would be the overarching aims.
Can you share any initial findings from the research that have surprised or deeply resonated with you?
I suppose I can only speak about my own work here, but for me the things that I didn’t expect or that surprised me have been firstly the network of professionals that might be part of the journey of the person with MS, what I mean by that is how many different people might be involved in caring for someone. I think for me that meant that I needed to know how they were all able to work together across professions if they were worried about violence and abuse. So, I ended up thinking a lot about how something like violence and abuse might get “lost” if lots of different professionals were involved in someone’s care, but also how if/when it works well, then those professionals really support each other in difficult situations. Secondly, I didn’t expect cognition to be spoken about as much as it was. It made me think that so much of MS can be hidden from view and that domestic violence and abuse is similar in that people often try to hide it. That fascinated me. I spoke with my colleague Kharis about this same question, and she said that she was surprised by how much the women with MS in her study were having to deal with, the complexity of their lives living with MS and trying to heal from DVA experiences.
Encouragement and Empowerment
What would you say to someone with MS who feels isolated or scared but isn’t sure if what they are experiencing qualifies as abuse?
I think I mentioned before that is you are feeling isolated and scared, then it is most likely the case that you are experiencing abuse. In these cases, it helps to speak to support organisations because they will be able to listen to what you are experiencing, will have experience in helping people and be able to help you to work out what further support you need. The important thing is to speak to someone you trust about it and who will listen and believe you. That person will be different for everyone, but it is important to seek help, as it is unlikely to get better and may well get worse.
How can family members or friends of someone with MS offer meaningful support if they suspect domestic violence and abuse (DVA) is happening?
The most important thing is to offer help, let them know that you feel worried about them and to listen to what they have to tell you. Don’t be surprised if people tell you that everything is fine and that you shouldn’t be worried. It’s really hard for people to tell anyone if they are scared about what’s happening in their relationship. They might be afraid that they will not be believed that someone will put them in danger by speaking to their abuser, that someone will involve the Police, that they will lose their children, their home, their job. Its crucial to keep the lines of communication open; if someone says they’re fine, keep supporting them, keep offering help, keep asking when the time is right. Even though you might want to, don’t tell them to just leave – it could be very dangerous for them to leave. IF they are ready, encourage them to speak to maybe a family doctor or a MS healthcare professional they trust and maybe go with them if they want you to. Some organisations and charities offer help to friends and family and can make really practical suggestions. In the UK, some of our MS helplines will speak to family and friends (although they can’t discuss patients of course) and may be able to suggest ways that the person with MS could seek help through them. In my experience, professionals on these helplines are very good at talking about one thing and listening for something else, picking up clues that something isn’t quite right.
What is your message to MS patients who feel hesitant to speak up about abuse because they fear they won’t be believed or understood?
I would say that it is important to say what you are feeling. So often we minimize things when we speak to others, we say we’re fine, we’ll be OK. When I was working as a midwife and had to ask about domestic violence and abuse, I found it better to use questions like “does anyone ever make you feel scared/frightened?” “does anyone check your phone/ e-mail to see who you’re messaging? “does anyone try to stop you seeing your friends/family?” “does anyone hit, kick, slap, push you?” “do you have your own money to spend?” People need to be able to name the things that are happening to them.
The fear of not being believed or understood is the biggest barrier to seeking help and this can only change when we are all able to know about and be aware of the issues and how they affect different people. Unfortunately, we live in a world where domestic violence and abuse is still seen as something that happens “behind closed doors”, where no one else should poke their nose into it. This is why in some ways the work we are doing with the MS-DVA research initiative is so important; it is opening up the conversation in the MS community, recognizing that this is a condition where people experience different risks, where they access healthcare and support across their lifespan and asking how can we model an approach to this issue that will stretch beyond MS and spark numerous conversations about DVA, neurological conditions, disability, holistic healthcare, all of those things.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
…fascinating in the scope of what people are trying to achieve. I have attended lots of conferences and I always come away inspired by the professionals’ dedication to their field and their patients, but also especially the charities working to support people living with MS. They are quite remarkable.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
I think that’s probably a question for MS specialists, but if I am allowed to have an opinion it would be to see more qualitative research giving voice to the people living with and affected by MS.
Farewell
Finally, what message of hope or encouragement would you like to share with the listeners?
I think that this is a fast-moving field and knowledge is developing all the time to try to understand this condition and how people can be supported. I think it’s important to get involved in research (and research design) if you can so that people focus on your voice. In maternity services we have many organisations that represent maternity voices, and they really make a difference. So, I would encourage people with MS to seek out opportunities to influence practice and care in the future.
How and where can interested people follow your research activities?
They can follow the MS-DVA research initiative on our website and also on LinkedIn. Take a look and it would be great if we could develop some collaborations in the future. I would love to learn about MS care in Germany, so if anyone is happy to connect with me and help me do that, please get in touch!
Take care of yourself or your loved ones if you or they are affected by domestic violence or abuse.
See you soon and try to make the best out of your life,
Nele
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