Multiple sclerosis (MS) can affect any part of the central nervous system (CNS) — brain and spinal cord — leading to lesions that may impact the body's functions, including cognitive abilities. This can cause some people with MS to lose their independence for periods of time, requiring them to rely on caregivers to get around and perform everyday tasks.
Although there is absolutely no excuse for abuse, disabling symptoms of MS can leave people more at risk for abuse. Unfortunately, roughly 4 out of every 10 people with a diagnosis of MS will suffer some form of abuse. This includes people across all ages and genders, and in all stages and types of MS.
Abuse is a difficult topic, but it’s important to discuss — abuse can be serious and even deadly to the victim. Here’s an overview of the types of abuse that can occur and the risk factors, as well as how to spot signs of abuse and prevent it from happening to you or someone you love.
Abuse can come in many forms, often with different types occurring at once. Some are more obvious, and others are more subtle. Whatever the form, however, no one deserves it.
Physical abuse is often what comes to mind when people think about abuse. Physical abuse includes getting beaten, hit, or slapped — but physical abuse can also be more subtle. For example, a caregiver who is handling a person roughly or aggressively while tending to their needs may be causing physical abuse.
Verbal abuse involves saying things that are demeaning or degrading, often in an attempt to embarrass the victim or make them feel ashamed while being cared for. Verbal abuse may be especially harmful to people with MS, as they are more likely to have related mental health issues such as depression or anxiety. Abusive language can worsen their emotional state and feelings of shame and guilt.
Sexual abuse, while not as common as physical or verbal abuse, has been experienced by approximately 8 percent of people with MS.
Abuse can also include neglect — the deprivation of necessary care for the person being cared for. Neglect means ignoring the person’s needs, such as depriving them of food, water, good hygiene, follow-up with medical professionals, and other necessities.
Abuse is never acceptable. It is important to recognize the factors that put people at higher risk for abuse to help prevent it going forward.
One of the common themes behind abuse is that caregivers become frustrated and feel as though they are overburdened with the care of the person with MS. Virtually every situation of abuse involves some element of frustration.
This frustration is why immediate caregivers and family members (especially spouses) may be the abusers in the relationship. However, abusive caregivers may also be paid helpers or even health care workers at poorly run nursing homes and other facilities.
Often, MS can affect a person’s ability to speak or otherwise communicate feelings and needs. On the caregiver side, family members and others may feel guilty or as though they can’t express their frustration in a calm and effective way. They may resort to abusive behavior as a way to vent those feelings.
People at later stages of disease progression who have lost more of their ability to move around, function, or communicate may be more likely to be exploited and abused compared to people with MS who live independently.
Caregivers with substance-abuse issues have been shown to be more likely to abuse the people that they are tasked with caring for.
Although abuse can be well-hidden at times, there are some common behaviors by caregivers that may indicate that something’s not right, including:
You may also observe signs of abuse in a loved one with MS, including:
Caring for someone living with MS can be a daunting and overwhelming task. If you are able, ask for and enlist the help of other family members and potential caregivers. Make it a team effort, and spread out the responsibilities so that no one becomes frustrated or feels overburdened.
There are also many resources available in the community. Counselors can help you talk over your frustrations in a healthy way. They can work with you to help manage your stress, find ways to express any difficult feelings you might have, and explore resources available in your area for support.
Assistive technologies are also available to upgrade your home environment to be more accommodating to the needs of the person living with MS. Many of these technologies help take the burden off of the caregiver and can help the person with MS get around more easily.
If you or a loved one is living with MS and you are concerned that abuse is taking place, you can call the National Multiple Sclerosis Society (800-344-4867) for referrals to agencies and services in your area.
The National Domestic Violence Hotline recommends several other support resources including:
If you or someone you know is in immediate, life-threatening danger, the U.S. Department of Health and Human Services recommends calling the police or 911 immediately.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 167,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Do you have questions or concerns about abuse? Share your experience in the comments below, or start a conversation by posting on MyMSTeam.