When I was first diagnosed with MS, I became very disabled very fast. I became completely dependent on my husband, which frustrated him. I allowed him to take his anger out on me because I felt so helpless and guilty. He would go into fits about how his life was ruined and became very depressed. He started taking medication, which made it better for a while, but then one day he went off the meds and told me that if he had to take a pill to live with me, then what was the point?
I would internalize all of his comments and think, ‘Look what I’ve done to him.’
I was lucky to have a social worker take notice of the situation. She helped me realize that this was not my fault, that my disability was not in my control and that if my husband couldn’t deal with it, that was on him, not me. She helped me find a better support base. You need to reach out to somebody — a friend, a family member or someone at the MS Society — just for that confirmation that it isn’t your fault. That’s the most important thing.
– Anonymous
A diagnosis of MS can have a major impact on the entire family. Roles and responsibilities are sometimes forced to change, and feelings of resentment, guilt and anger can often arise in both the person living with MS and their partner or spouse. A sudden loss of independence, financial or otherwise, places people living with MS in a vulnerable position if a caregiver becomes verbally, emotionally or physically abusive.
If you are a person who lives with MS and think you may be in an abusive relationship, here are some of the ways you can identify the abuse, reach out for help and ultimately leave the situation if and when you are ready.
Identifying abuse
Physical violence often comes to mind when we think of abuse. While this kind of abuse does happen in families living with MS, just as it does in other families, it’s also important to recognize less obvious forms of abuse that can also occur.
If you are experiencing physical abuse or do not feel safe and need to leave quickly, identify a window of opportunity when the abuser will be away, contact someone you trust to help you and get yourself to a safe place. If necessary, contact the police.
Abuse can be verbal, and it’s characterized by cruel, demeaning language that is aimed at another person. Abuse can take the form of neglect, which is when a person is deprived of essential care, including adequate food and drink, clean, dry bedding or opportunities to engage with the outside world. Abuse may also be in the form of bullying by handling a person aggressively while assisting with dressing, bathing, toileting or a transfer.
Abusive behaviour is the misuse of power and control in a relationship. Period. Some people might use certain external factors like stress or frustration to excuse or explain it, but there’s no explanation you can give that says, ‘It’s okay for me to abuse.’
– Lisa Manuel, Family Services Toronto
Reaching out for help
In many cases, people in abusive situations feel threatened, trapped and scared to ask for help, for fear their abuser will find out. For people living with MS, caregiver abandonment, whether they are abusive or not, can be quite daunting due to a heavy reliance on them for daily function.
If you’re feeling a need to reach out, it’s important to first identify the people you interact with on a regular basis.
You don’t have to know exactly what you’re going to say in order to reach out for help. Identify a moment when you will be alone with a person you trust and let them know what is happening that is making you feel uncomfortable, unsafe or abused. Let them know you need assistance extracting yourself from the situation.
Create a personal safety plan: connect with a nearby friend or neighbour and develop a signal to indicate that you need help (ex. knock on the wall, flash the porch light, specific word in a text, etc.). Keep a cellphone or wireless home phone on your person at all times when you are at home. Keep important documents (like a birth certificate or passport) and some money or a credit card in the car or with a friend in case you need to leave quickly.
You’re not alone. If you think you might be in an abusive relationship, call us at 1-800-268-7582 for support, information and helpful resources.
Excellent information!!!
My company’s confidential EAP (employee assistance program) was able to help me get out of an abusive relationship.
Firstly, we need to identify exactly what abuse means. In it’s physical form it is easier to identify. In it’s emotional and financial forms it’s much harder (often emotional abuse lasts longer than physical abuse). From a disability perspective we need to understand disablism.
I think if people want to know whether disablism (or ableism) exists one need only turn to the statistics and research into the abuse that people with a disability experience. In those statistics and research lies the irrefutable truth. These stats (and research) are something that has been experienced by people with disability for time immemorial and as many texts point out not only are the abuse stats staggering (and increasing) but even less pronounced abuses such as how poorly people with disability are portrayed on our screens (TV, movies etc) is embedded in our cultures. So whilst there is considerable evidence of overt abuse and mistreatment there are also subliminal messages and covert abuses that happen at a subconscious level. For me they are a daily grind that no matter who I have in my life (family, friends and partners) and also how much I give of myself to others, I will find that I will at best be that lesser being in their minds and hearts and at worst their target for whatever action they choose to inflict. It’s appalling but then abuse is appalling.
If you are a person with a disability (like myself) and have been abused, bullied, manipulated and mistreated (like myself) then you may well understand and nod in agreement that disablism not only exists but is endemic and on the increase. To add to the misery you are disbelieved in regards to your experiences. And that to me multiplies the oppressions* we experience viz a viz:
1. We have the daily battle with our disability,
2. We have the battle of disablism,
3. We have the battle of abuse, and
4. We have the battle of being disbelieved
Unfortunately, I don’t believe that disablism will gain the same traction of the other ‘isms’ (racism, sexism etc). Disablism is the last bastion of the ‘isms’ for a reason, it’s the hardest one to tackle. Any gains will be at best limited and therefore we will always be a target for abuse of some kind whether that be delivered consciously or unconsciously in the mind of the perpetrator(s). Sad but true. For me, I will never trust again…ever, it’s just not worth the risk.
*I use the term multiple oppression for the dot points I’ve listed above, however, I understand the term multiple oppression applies equally to those (like me) who also face oppression on more than one front (eg someone who is black, female, lesbian and has a disability will face multiple oppressions). What is not generally understood is how multiple oppressions work. If you are oppressed in, say, three different ways (eg disability, sexuality and gender) then the oppression is not times three, it is far more than that. Oppression rises exponentially the more types of oppression you endure. Additionally, many that are multiple oppressed experience not fitting in with any group. So for example, if someone has a disability and is gay they will be oppressed by those who like to abuse either group but you will also be oppressed by those within your group. This results in having no group at all to belong to and adds further to the oppression.
I might add to my comment above, that ppl with disabilities, regrettably and with considerable difficulty, will have to remain eternally vigilant against abuse which can come from anywhere even from what was perceived as safe places like families. This, of course, serves to add to the oppression already prevalent, however, it is probably wise to realise that given the statistics and reality in which we live we will need to remain distrustful of those around us. From my perspective I wish I was so much more distrustful in the past than I am now.
What the general community will never ever understand is the lived experience of those with a disability unless they themselves experience it at some time. They will not understand either, the possibility that we are, generally speaking, not treated very well. Add that to the disability itself and it’s no wonder things are as they are. For me, I must turn away from family, friends and others for support and turn to other areas of support where understanding and knowledge of the issue of disablism is understood. That is why I truly appreciate the work and research that is done in this area.
[…] a relationship’s power dynamic, which in turn can lead to conflict and, in more extreme cases, situations of abuse. Talking openly right from the beginning about the effects of MS on both your lives is important to […]
[…] a relationship’s power dynamic, which in turn can lead to conflict and, in more extreme cases, situations of abuse. Talking openly right from the beginning about the effects of MS on both your lives is important to […]
The number is not in service.
Hi Elaine – Thanks for the comment. We’ve verified the phone number and it does in fact lead to our main line. Have you tried a second time?
I suppose it doesn’t occur to anybody that the person with MS could be the abuser?
My husband and I met on an MS forum 14 years ago. I was on there looking for answers because I didn’t have a firm diagnosis myself but my future spouse did.
14 years later he is secondary progressive and tho I can keep up with the physical demands I cannot deal with his constant lack of consideration for my limitations, not to mention his constant criticism of my inability to measure up to his demands and expectations that he feels entitled to.
I have a heart condition, a history of mini-strokes, high blood pressure, fibromyalgia, and vestibular issues,
He don’t care, and his family only cares about how well I take care of him or fall shirt.
They say things like,”I better take take good care of him!”
and stuff like, “if your sick, who’s gonna look after him?”
He and they can talk to me and treat me any way they feel like it but if I stand up for myself; that’s abuse?
Hi there,
Thank you for reaching out to us. We understand that this may be difficult to talk about, and want you to know that you are not alone. If you think you might be in an abusive relationship, please contact 1-800-268-7582 for support, information and resources.
I’m currently dealing with my sister attacking me via text messages. She doesn’t care that I’m currently in a flare. She spent 12 hrs laughing at my disability and saying no wonder no guy wants you. She made up a huge lie about my Mother telling her I’m jealous of her because she has kids. Told me she was donating my Christmas presents to charity. According to her apparently she’s my guardian. She has no legal document. I told her that I don’t want her looking after me. Her response ” good. Would be only another job” Her attacks have been going on for nearly 3 yrs. I’m kinda stuck. Its good to read people discussing their experiences. I have never once done anything to hurt my sister, so she has been creating stories about things that haven’t happened. Don’t know what to do