Abusive Relationships and IBD

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I was about fourteen or fifteen, and I remember my grandmother coming back from church in an irate state. While my grandma always speaks her mind, she usually lets people have their opinion. Not this time. One of her choir buddies told grandma that her 20 year old grandson had started dating a girl with Crohn’s Disease. What if he ended up marrying her? He’d have a sick wife all his life! He’d throw away his life caring for her. Shaking with anger, she told my parents, “and I told them to shut up. I said anybody would be lucky to marry Verena one day, LUCKY!” I found out later, that she had asked the conductor to stand somewhere else in their formation, to not stand next to the lady again. Her name was never uttered again in our house.

I am telling this little story, because for all their faults my family has, they always let me know I was loved. Not in the constantly saying “I love you” way, but by ferociously defending me, and letting me know I was ok, the way I was. I credit them and a lot of luck with the fact that I have never been in an abusive relationship.

Unfortunately, too many other women do not have that luck. Women with disabilities are at a much higher risk to suffer from domestic abuse. 

Let’s rewind, and look at some legal definitions. While domestic abuse is often shown in the media as simple physical abuse, it goes much further. The US Department of Justice has set up five different categories for abuse: Physical, economical, sexual, psychological, and emotional. They also make very clear that :

Domestic violence can happen to anyone regardless of race, age, sexual orientation, religion, or gender. Domestic violence affects people of all socioeconomic backgrounds and education levels. Domestic violence occurs in both opposite-sex and same-sex relationships and can happen to intimate partners who are married, living together, or dating.

Two studies have looked at women with IBD and IBS (those are two very different things) who had been abused. The first found that women with IBS had a higher rate of self-blame and emotional abuse than women with IBD. The second study, conducted ten years later, in 2009, didn’t find these differences, in fact, they did find, that women who previously experienced abuse displayed higher levels of stress. No shit, Sherlock.

Now, I can only speak from observation, from talks with survivors (and yes, those women are survivors, don’t anybody dare to belittle this experience) and my own reading on why women often don’t speak up.

Self-Blame: This was a big part of the study.  I see it again and again on internet forums, where IBD and IBS women do speak up. Now that they feel less attractive and/or are sexually less active, and often are not able to “pull their weight” (whatever that means), they feel they deserve the belittling, nasty accusations, or constant criticism of their partner. Self-blame is often connected with excuses for the horrible behavior of their partner “he/she didn’t sign up for this when we married” is a chorus you often hear. While this notion may be understandable, it NEVER justifies any type of abuse. NEVER.

Fear of not being believed: Abuse is often hidden, and even professionals like nurses and doctors can be duped. I recently read the account of a women with Ulcerative Colitis, who managed to talk about the abuse she had experienced years later. Her husband had been the kindest, most caring person to nurses and doctors, worried about his sick wife. Going with her to every doctor’s appointment, “taking care” of all the prescriptions for her. Once they were back home, and she was halfway back to health, he took away her medication, made sure she had no contact with her friends, or anyone she could talk to. She also wasn’t allowed to have a job, to be financially dependent on him, which of course, to the outside, was presented as him being worried about her being too stressed out.  This went on until one nurse became suspicious, and the victim finally had found someone to confide in. Does this sound like a brutal case to you? Unfortunately, this happens more often than you’d think. Television shows us abusers as these dumb brutes, but the reality is different.

Fear of Victim-blaming: “You have quite a mouth on you”- “Not everybody can deal with an assertive woman”- “Well, your husband has quite a lot to put up with”- These were all things that people “jokingly” told me before. I wasn’t and I am not laughing. Apparently there is a codex of how women are supposed to behave. The subtext of these utterances, whether people who make them know it or not, is that if you are abused, in whichever way, “you had it coming.” You had it coming because you were too loud, because you didn’t apologize for being sick, because you asked for SOMETHING. You didn’t dress right, you repeatedly went over budget, whatever. This sounds outrageous to you? Remember Rihanna? While the general public was disgusted, there were a good number of people wondering what led her abuser to beat her up “that bad.” Cause a little was ok? Victim-blaming is alive and well, ask any divorce lawyer. The center for relationship awareness has a powerful example to illustrate how victim blaming works.

Practical and Economic Reasons: Where are you going to live? What are you going to live on? Also, if you are on your partner’s insurance and dependent on expensive treatment (hello infliximab), the “getting out” may not be as easy as it may seem. Depending on where you live, getting to a free clinic may pose a problem. Getting a lawyer to represent you in case of a divorce is expensive. Shelters are already full, and then finding a shelter that can accommodate someone with a disability is extra hard.

Our slow justice system: Prosecution can take a lot of time, as the justice system is overburdened. In addition, the burden of proof is on the victim. “With a very low prosecution rate, survivors are not likely to pursue prosecution when they will have to be revictimized in court without any meaningful results. Perpetrators often threaten the partner if they don’t recant and even when victims do “press charges,” it often only leads to a slap on the wrist for the perpetrator,” writes the Center for Relationship Awareness. There is no “just” in Getting out

Getting out

Most hospitals these days have the numbers for help hotlines inside the women’s bathrooms now, so that you can make an undisturbed call. Getting out of an abusive relationship may take time. Especially if you are disabled, and/or if kids or pets are involved, you don’t just jump into the car and go.  Most health care providers though would be happy to assist you in so-called “safety planning”:

“Safety planning, in these cases, can include arranging for backup caregivers and packing a bag with money, copies of keys, important documents, spare assistive equipment, extra prescriptions and medical supplies and a change of clothes.” (Family Violence Prevention Fund).
 Here is a link with how to come up with a safety plan that can be personalized.
Find out what kind of organizations are in your area that could help you. Delete your search history afterward!
Here are the numbers for the National Domestic Violence Hotline:
1-800-799-SAFE (7233)
1-800-787-3224 (TTY)
Here is another guide, that details possibilities and ways to get out. Mostly written for able-bodied people, but it is worth a look.
The Afterward
Let’s assume everything works as planned, and in a movie, the credits would roll. This is when the most painful thing of all happens- the building yourself up and healing. Depending on your situation this may be both physical as well as emotional healing, or any combination of the two. Be kind to yourself. Seek help, go to therapy, survivor groups, forums online- and always remember that it is NOT YOUR FAULT. 
Likewise, if you are a friend, family member or even new partner of someone who has been abused. Be kind, be patient. Don’t be upset if they don’t jump at life with all their might. Don’t fall into the trap of not believing, giving unqualified advice (“why didn’t you just do xxx?”) and support the survivor as best as you can. If this requires you asking an expert on how to do it, don’t be ashamed. Remember to let your loved one, friend and family member know that they are cared for, that they are worth of love and friendship, and that they can rely on you.
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5 comments

  1. Thank you for sharing this information – It’s really important and an issue that affects way more people than anyone would guess.

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