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Richard C. Senelick, M.D.

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Would Your Relationship Survive a Disability?

Posted: 01/10/11 08:56 AM ET

Ken and Melissa had been high school sweethearts with marriage following his basic training in the Marines. Two children and a new house followed in the next three years. Despite the usual irritants and money issues, they felt they had a great marriage. Melissa was even handling his deployment to Afghanistan, becoming part of the tight support system of wives and families in a similar situation. That was until an exploding IED ripped through Ken's legs. He was now in a military rehabilitation center, learning to walk with his new artificial legs and adjusting to his new reality. When he looked around the hospital he considered himself fortunate in that he could still kiss his wife, hold his children, and interact with them from a thinking and emotional standpoint. As hard a time as he was having adjusting, he knew that his brain injured comrades were struggling to recognize their families and may never be able to live by themselves. He never mentioned it to Melissa, but at night when the lights were off and it was quiet, he often wondered if Melissa would stay with him? Would their marriage survive this horrible event and would Melissa love the "new" Ken the way she had the "old" one?

Building Relationships
As a neurologist who specializes in neurorehabilitation I have treated thousands of patients who have faced the same concerns as Ken. Disabilities come in all forms and with different challenges. A spinal cord injury or amputation will result in dramatic physical changes but usually leave the person cognitively intact, while a brain injury or stroke not only causes physical disabilities, but also causes cognitive and behavioral disabilities that can substantially change the person.

Many years ago I heard a quote attributed to Barry Rath Ph.D., a neuropsychologist in Texas. "That which makes us most human is most vulnerable to brain injury." We form relationships based upon unique bonds and attractions to each other. Unfortunately, I have had many a parent tell me that they loved their brain injured son or daughter and would care for them, but they were taking a stranger home from the hospital. The same is true for a spouse who now becomes the caregiver for someone who is very different than the person they had been living with. Over 40 years ago my wife fell in love with me and we decided to marry. Trust me, I suspect there is a lot about me that she is not particularly happy about, but she is still in love with some portion that brings a smile to her face. If I have a brain injury, stroke or become demented and that special part she fell in love with disappears, she is left with only the parts that are annoying or difficult to deal with. You can see the problem.

I decided to ask my friend and the psychologist at our Rehabilitation Hospital, Hal Hoine Ph.D. to talk with me about what makes for a good relationship and whether we can predict who will weather the storm of a disability and stay together. For simplicity sake I will refer to all forms of opposite and same sex partnerships/marriages as relationships.

It quickly became clear that all relationships are a balance between what you like and don't like in the relationship. Dr. Hoine notes that when he sees couples in counseling he may refer to the "cost equation" of staying together versus splitting up. It applies to every aspect of the relationship: physical, emotional, financial, children, social pressures etc. Take the benefit of staying together and subtract the "cost" of staying together. Then look at the benefit of splitting up and subtract the cost of splitting up. Relationships take work and having a disability can unbalance the equation. If dealing with the disability is difficult, it may be too hard to work on both the relationship and the disability. I have had many a person say to me, "I didn't sign up for this." No one "signs up" to be a caregiver, but it happens.

Relationships Fall Apart Because Of:

  • A lack of trust. How reliable is your partner? Are they someone you can count on? All relationships want predictability and security as well as fidelity.

  • People take the "good" for granted and focus on what they consider to be bad.

  • A loss of empathy. The ability to view the relationship from the other person's perspective is essential in dealing with the stressors of a relationship.

  • They no longer have common interests or their needs change. Not everyone deals well with change.

The Impact Of A Disability
Disabilities break down the basic structures of relationships. Roles may be reversed overnight with the woman becoming the bread winner or the man becoming the homemaker. These are traditional roles and it can easily be the opposite where a woman is forced to put a career on hold or abandon it altogether. We typically talk about how brain injury, stroke or dementia will exaggerate a person's preexisting personality traits. A difficult, short tempered and impulsive individual becomes just that much worse as a result of the disability. However, we also need to look at it from the caregiver's point of view. A nurturing partner is more likely to do well and adapt more easily than someone who is more self centered. The disability places increasing demands on the relationship.

The common wisdom had been that the divorce rate was higher after someone has a brain injury. However, a recent article, "The Truth About Divorce After Brain Injury," notes that in a study of 120 brain injury survivors, 75 percent were still married at the time of follow up.

Important predictors were:

  • Older persons were less likely to get divorced.

  • People who had been married for longer periods were less likely to get divorced.

  • The more serious the injury the greater the likelihood of divorce.

  • In severe injury groups, minority group members were more likely to stay married.


A Relationship Checklist
Dr Hoine and I sat down and created an unscientific checklist that you can use to evaluate your relationship and how it might weather the storm of a disability. We can tell you from the experience, that these storms are not predictable and show up at your front door both unexpected and unannounced.

  • Communication: Evaluate how well you and your partner communicate and remember that it is less about what each of you say and more about what each of you hear. A simple request to take out the garbage may be heard as just one more unreasonable demand or an unfair criticism.
  • Competence: The individual's perception of their competence. The more an individual has a sense of self competence the more secure they feel in their lives and their relationships.
  • Maturity: Do you have a mature relationship? The prominent psychoanalyst, Eric Fromm, discriminated between mature and immature relationships by writing that in an immature relationship the individual says, "I love you because I need you," as opposed to the mature relationship saying, "I need you because I love you." I don't need you to make me feel important or special; I need you only for the relationship.
  • Empathy: This is the ability to see the relationship and world from the other person's perspective.
  • Coping Skills: The healthier the individual's personality the better one's chances of adapting to change. The preexisting personality of the able-bodied partner is critical to the post disability relationship.
  • Financial Resources: We can quote studies on happiness that diminish the importance of the relationship of money and happiness. However, it does make a significant difference whether one has the financial resources to deal with the disability. This may mean having good medical insurance or the financial resources to help with care taking, or just provide a little relief to recharge your batteries.

Just writing this article made me think differently about things; hopefully it will do the same for you.

 
 
 

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HUFFPOST SUPER USER
momstudent
10:56 PM on 01/13/2011
Here is a bigger question...can a marriage survive when one or two children have life long disabilities? One parent accepts and moves on the other may become bitter and withdraw? I believe it is one thing to survive the onset of a spouse's disability within limits...but your own children? I have seen many marriages break in the disability community...how do you argue with a spouse about caring for their child and then have no energy for them? Or worry about money etc...
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HUFFPOST SUPER USER
Camis
09:28 PM on 01/13/2011
nearly all my relationships - of all kinds - disintegrated when i became disabled. which didn't help.
01:13 AM on 01/13/2011
Interesting post. There are so many types of disability. Some are not diagnosed- or are misdiagnosed.
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Toni Bernhard
I wrote How To Be Sick: A Buddhist-Inspired Guide
06:16 PM on 01/12/2011
Relationships are deeply tested when one person becomes disabled. I write from experience because I became disabled in 2001. I've now written a book to help people and their caregivers cope with the mental suffering that accompanies physical or mental disabilities. Illness and wellness need not be mutually exclusive. My book offers many practical steps that can help us with the day-to-day challenges, starting with accepting this change in our lives instead of mounting a militant resistance which only increases our suffering.

I hope this article helps to raise people's awareness of the pressures on a relationship when one partner becomes disabled.

Toni Bernhard
http://www.howtobesick.com
10:04 AM on 01/12/2011
I have been married to a man with a spinal cord injury for 17 years now. He was injured and confined to a wheelchair years before we met. Nothing prepares you for marriage under normal circumstances - nothing can prepare you for a marriage to someone with a disability either. I don't think you can really say what you would or would not do until you actually are forced to make the choice - staying or leaving is complicated and doesn't always have anything to do with how much you love your spouse or how much they love you. I love my husband very much, we have two children that we both love very much. Life can be very complicated.
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HUFFPOST SUPER USER
teresa1960
08:52 PM on 01/10/2011
My experience is a big fat NO. An auto accident left me with an injured neck and back and fibromyalgia. So I'm left with chronic pain and depression. There is no energy for any intimacy not to mention that it is very painful. The medication that I took in the past caused a significant weight gain, I cannot lose due to restricted mobility. My relationship has dwindled down to companionship, however, that too is strained. I'm just waiting for it to end perminately. What bothers me most is that he cannot understand my physical limitations, and sometimes he gets angry when I can't do things.
04:14 AM on 01/14/2011
I'm really sorry to hear of the difficulties you are facing. I too have fibromyalgia and can fully understand the weight gain and lack of energy etc. ...not to mention the chronic pain. Luckily my experience with my marriage has been better than I could have hoped for. My husband was severely disabled when we met and has in the last few years gone from being cared for by me to caring for me. I'll admit to occasionally having insecure thoughts and worries that he only puts up with the situation due to a sense of obligation (usually when I'm depressed!) but I know deep down that what we have is very special and genuine.

I felt compelled to reply to you, not to gloat and say how wonderful things are for me but, to hopefully offer a little encouragement. There are patient, kind and tolerant people out there who will value you for your abilities and not your disabilities. I would be wondering if it hadn't been through injury and illness if your relationship would be okay. In my experience, the chances are that if someone lacks understanding or are angered by things outwith their control, tensions will often arise without much prompting. I really wish you all the best whatever the outcome - it sounds like you deserve happiness in your life.

F+F by the way.
06:50 PM on 01/10/2011
My cousin was in a motor bike accident and became mentally and physically disabled. His relationship with his girlfriend instantly went from romantic to platonic, and honestly it made a lot of sense that way. She was, and is, there for him but deserves to be with someone who can give her more and my family always understood that and support her.
So naturally it depends on the kind of injury/disability. When someone becomes mentally disabled, its perfectly reasonable to end a romantic relationship in my opinion. On the other hand, it was be kind of terrible to end a serious relationship for something like becoming wheelchair bound (though we shouldn't forget the stress that the partner goes through).
06:44 PM on 01/10/2011
Great article Richard for all us baby boomers who are now more and more at risk. Good food for thought.
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06:27 PM on 01/10/2011
I would think women would stick it out a little linger than men in the same situation
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Amadahy
loves peanut M&Ms and Whippoorwills
07:28 PM on 01/10/2011
I wouldn't.
09:22 AM on 01/11/2011
Excuse me for a moment.....

BWAHAHAHAHAHAHAHAHAHHAHAHAHAHAHAH!!!!!!

(takes a moment to breathe)

BWAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAH!!!

Thank you for that, I needed a good laugh this morning. Are you a comedian? Because that was a good one!
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09:58 AM on 01/11/2011
Sarcasm of course. Personally, I would ask my women to leave if I was disable. I would not want to put that burden on anyone. However, I am also the same person who says the first time I pee on myself and don't know it...I am ready to go.....
05:13 PM on 01/10/2011
Yes. Ours has survived decades of my ever-worsening MS, our daughter's brain tumors and surgeries and years of physical rehab, and my husband's medical problems.
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jimme
They're Right, but never correct.
12:39 PM on 01/11/2011
My wife is one of the only reasons I haven''t given up after being diagnosed with MS. She is truly remarkable, like so many others, who fight for their spouse, instead of kicking them to the curb.
We're going on our 24th anniverasry, and the love that was there on day one is as strong, if not stronger, today.
01:26 PM on 01/11/2011
jimme,

We are both very fortunate. We will celebrate our 33rd anniversary shortly.
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CoastalNC
Good thoughts create good things
04:27 PM on 01/12/2011
And all those things have probably given you more strength and more compassion for your loved ones and others.

I am so tired of my fibromyalgia and not being able to do anything, so tired of feeling that I am losing me BUT then I look and think about all the lessons I have learned because of it and I am grateful for those gifts.

Best wishes to you llisa, as always :-)
07:56 PM on 01/12/2011
Thank you CoastalNC. Hubby says we have to stick together--nobody else would have us.

But seriously, we have met some wonderful people through all of this, and my daughter has a terrific husband who knew about all her medical problems and her infertility (due to the tumor that messed up her pituitary) and loves her "anyway" (as she says). And their beautiful little girl's adoption is about to be finalized. My daughter always said she would make the life she wanted in spite of the obstacles, and that is just what she is doing. She's been an inspiration to us.

Best wishes to you, too! We'll just play the cards we're dealt, but we'll play them well!
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HUFFPOST SUPER USER
Angel Whitebird
Invest in America..Buy a Congressman!
04:51 PM on 01/10/2011
I found after taking care of thousands of people in my nursing career..The old folks would stay together..The young guys after taking care of a sick person..Didnt have it in them..All left their women after they got sick because the "sex' part of the relationship was gone.( for other healthy women!!).Just my experience folks..My answer..NO blooming way!..I know mine wouldnt survive one minute!!
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HUFFPOST SUPER USER
gneep
if it wasn't always the same, it'd be different
05:11 PM on 01/10/2011
As your significant other Angel, I resent the heck out of this statement! Only a loser would leave someone for a disability.
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HUFFPOST SUPER USER
Angel Whitebird
Invest in America..Buy a Congressman!
07:04 PM on 01/10/2011
If I could retract and delete I would do so..I am very very sorry..I guess I based my statement on the many young women I took care of in my career and the "losers" that left them..I'll eat my words.
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HUFFPOST SUPER USER
Angel Whitebird
Invest in America..Buy a Congressman!
04:36 PM on 01/10/2011
No blooming way!!.After taking care of alot of young women in my day( I was a nurse)..All their men have left them after the trials of taking care of them..Left them for healthy women!..Seems to me alot of men dont have the gumption nor the guts to stick it out..Just my experience!
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HUFFPOST SUPER USER
superjules
07:51 AM on 01/11/2011
Just so you don't get too jaded, I know a couple (not married) who had been dating a short time when she found out she had breast cancer. He stuck with her through everything. Moved to her city, the whole nine yards. Now that she is better, she dumped him.
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BlueZoo
Independent voter, Independent thinker!
03:13 PM on 01/12/2011
Perhaps his sympathy was more than she could take? There is a difference between love and sympathy and, when one overrides the other, it can break a relationship forever. If he constantly reminded her of how much he did for her when she was ill, that too can break you. We are not privy to what went on in that house but I'd bet that some of this did happen.
12:54 AM on 01/13/2011
Angel Whitebird- Some men and women leave their healthy partners also. When a friend was married, there were six bridesmaids. Four were married at the time. Three are divorced-all healthy women. It depends on the person-some people shoule never get married.
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sophiemaki
03:39 PM on 01/10/2011
all i know is that i had a neighbor.....growing up. he went off to war.
his wife was friends w/ my mother...and the 2 kids were our buddies.
when he came back from war...after months at Walter Reed..he was in a wheelchair. their house was remodeled.........for wheelchair access.. the car was redesigned also.
2 year later...........the wife and kids were gone.
that is all i know about this.
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Amadahy
loves peanut M&Ms and Whippoorwills
07:41 PM on 01/10/2011
:(
02:06 PM on 01/10/2011
What happened to "in sickness and in health"?
I'd stay with my fiancée; I love her.
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HUFFPOST SUPER USER
Angel Whitebird
Invest in America..Buy a Congressman!
04:37 PM on 01/10/2011
You are a rare breed.!!.Read what I wrote above..I commend you!
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Amadahy
loves peanut M&Ms and Whippoorwills
07:42 PM on 01/10/2011
I don't believe that's the case Angel. You've just been given first seat experience to lesser men.
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HUFFPOST SUPER USER
thinkingwomanmillstone
I'm nervous. My life is under a Micro-bioscope.
01:45 PM on 01/10/2011
I have pretty severe auto immune disease that limits my physical ability considerably. I am not comparing my disability to someone who has been brain injured, or suffered a traumatic injury through war or accident, just sharing my point of view. My mother had auto immune disease and was pretty much bed ridden when my husband met her 35 years ago. My adult daughter has serious health problems and was talking to her Dad about whether she would ever find a man who could love her despite her illness. He told her..."I knew when I met your Grandmother what the likely story would be for your Mom. I just knew she was worth it." It was very reassuring to her and was the most loving thing a husband could say to his wife.(my daughter told me what he said) I have no doubt whatsoever that he would support me and I would support him.
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CoastalNC
Good thoughts create good things
04:42 PM on 01/12/2011
What a wonderful husband you must have....and what a wonderful person you must be for such loyalty from the beginning.
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HUFFPOST SUPER USER
thinkingwomanmillstone
I'm nervous. My life is under a Micro-bioscope.
04:49 PM on 01/12/2011
Our life may be difficult at times but it is great...we have so much together and as a family that we are lucky people.