Keep reading. Even though abuse is a topic that no one likes to read or think about, it can happen in any relationship—personal or professional—even in the most loving of families. The best way to ensure that it doesn’t happen to you or someone you love is to recognize the forms abuse can take, the most common triggers of abuse, and the steps that can be taken to keep important relationships respectful and safe.
What Are the Most Common Forms of Abuse?
The form of abuse that usually comes first to mind is the domestic violence that is talked about in newspapers, magazines, and on TV. While this kind of extreme physical abuse happens in families living with MS just as it does in other families, less obvious forms of abuse also occur. Abuse can be verbal—when cruel, demeaning language is aimed at another person—or it can take the form of neglect—when a person is deprived of essential care, including adequate food and drink, clean, dry bedding, or opportunities to engage with the outside world. In its subtlest form, abuse may simply involve handling a person roughly or aggressively while assisting with dressing, bathing, toileting, or a transfer. Whatever the form, abuse is not acceptable—and no one deserves it.
Who Are the Victims of Abuse?
Anyone can be a victim of abuse. Most often it is a person severely disabled by MS who requires a lot of care and is unable to do or get things without assistance from someone else. But caregivers (family members or paid assistants) can also be abused—by a person with MS who uses foul or demeaning language or lashes out with sharp fingernails or a cane or crutch.
What Are the Risk Factors for Abuse in MS?
Frustration is the common factor in virtually every abusive situation. Caregivers (family members or paid helpers) can become frustrated by the exhausting demands of their role—by the time, energy, and patience it takes to assist someone who is severely challenged physically and/or cognitively. Spouses can feel overwhelmed by competing demands at home and at work—by feeling as though they are constantly “on call.” They may also resent the changes that MS has brought to their partnership—particularly when hands-on personal assistance with dressing, eating and toileting takes the place of other shared activities. People with MS can be frustrated by the losses of function and independence—having to depend on others for personal care and the basic activities of everyday life can test the patience of even the most even-tempered person.
Lack of communication is a second common factor in abusive situations—the kind that comes from being unable to talk openly about a difficult situation. Family members may feel too guilty or uncomfortable to talk about their own frustration, anger, sadness, or exhaustion. People with MS may not want to risk upsetting the people who are providing them with care and assistance. But without the ability to share feelings and concerns, families can’t engage in the kind of problem-solving that would make the situation better.
The feeling of having no place to turn is a third common factor. When people feel locked in a no-win situation—with no end or relief in sight—they may be overwhelmed by feelings of hopelessness, anxiety, and even despair. Any or all of these feelings can cause people to lash out at those closest to them. In other words, the feelings about MS—and the challenges it poses for all concerned—spill over in angry words or actions towards the other person.
What Can Be Done to Reduce the Risk of Abuse?
- Start by reminding yourself that any form of abuse is unacceptable, even in situations that are frustrating and difficult.
- Acknowledge that life with a chronic, unpredictable disease like MS can be physically and emotionally challenging for everyone—those who have the disease and those who love and care for them. In other words, there’s no need to engage in a “contest” over who has it worse.
- Tap all available resources:
- Reach out to friends and family for support and assistance.
- Take advantage of all that assistive technology has to offer to make things simpler.
- Make your home environment as user-friendly and accessible as possible.
- Call the National MS Society (1-800-344-4867) for referrals to agencies and services in your area.
- If you find yourself feeling totally overwhelmed—or saying or behaving in ways that you would be embarrassed or ashamed for others to see—take that as a signal that it’s time to seek some help. There is no shame in feeling overwhelmed. The Society can refer you to a counselor in your area who is knowledgeable about the stresses and strains of living and dealing with chronic illness. The counselor can help you find ways to express the difficult feelings, explore local resources, and devise strategies to reduce the tension and pressure in the household.