Why Do Stroke Survivors Lose Friends?

Through my involvement with stroke survivors at all levels, I heard from a lady who had to move 2000 miles away to get out of an already horrid relationship. Reason being, she was under so much stress that once she had the stroke, the situation was unbearable. The distance was worth it for two reasons, I imagine: the distance put, well, distance between her and him AND she is happily situated now, 10 minutes away, near her daughter. I'm a sucker for stories with happy endings.

My online stroke support group works on giving me distance, too--to stay away from people who can't tolerate that I'm different than when they knew me before! First, some research on why the intolerance.

Studies say it is predicted that by 2030, there will be 12 million stroke deaths and 70 million stroke survivors. It stands to reason that many stroke survivors feel unsupported. So the questions remains, can the complex needs of survivors and families and friends cope with the aftermath of stroke? Or any type of brain injury, for that matter.

It is estimated that up to one-third of survivors will have communication difficulties including aphasia, dysarthria, or apraxia of speech (language comprehension, producing speech, and/or difficulties with reading and writing). Research says stroke survivors with communication problems aforementioned may have difficulties living in a community with those that don't have such problems, resulting in a poorer quality of life and not joining activities of daily living. Furthermore, evidence of the survivors are also more likely to suffer depression and have reduced social interactions. 

The National Institutes of Health published an article about why people lose friends after a stroke and why this phenomenon occurs across the board . 

Under the helm of the English study, Northcott and Hilari explored why people lose contact with their friends, and how friendship loss and change is perceived by the survivors.

Between 8 and 15 months post stroke, 29 participants were recruited, 10 having aphasia. The researchers deduced the main reasons given for losing friends were: 

1. loss of shared activities 
2. reduced energy levels
3. physical disability
4. aphasia
5. unhelpful responses of others
6. environmental barriers
7. changing social desires 

"Those with aphasia experienced the most hurtful negative responses from others and found it more difficult to retain their friends unless they had strong supportive friendship patterns prior to the stroke," says the study. 

"The factors which helped to protect friendships included: having a shared history, friends who showed concern, who lived locally, where the friendship was not activity-based, and where the participant had a 'friends-based' social network prior to the stroke."

Another study by Martinsen et al in a nursing journal examined psychosocial consequences following a stroke and the survivors’ ability to participate in and carry out the ordinary and expected roles and activities of family life. 

Twenty-two stroke survivors aged 20–61 years were interviewed extensively six months to nine years after stroke onset. The struggles are summarized in two main categories: struggling to reenter the family and screaming for acceptance.

"Being provided with opportunities to narrate their experiences to interested and qualified persons outside the home context might be helpful to prevent psychosocial problems," the study says.

Normality includes feeling sad over the problems caused by stroke. However, a portion of the survivors experience a major depressive disorder which should be diagnosed and treated as soon as possible. The people we should focus on are the people with a major depressive disorders which includes a number of symptoms nearly every day, all day, for at least 2 weeks. 

These always include at least one or more of the following, and all the time beyond 2 weeks:
  1.  Feeling sad, anxious, pessimistic, and/or hopeless 
  2.  Loss of interest in things that the person used to
       enjoy
  3.  Feeling restless, loss of energy, and/or feeling
       fatigued constantly
  4.  Feeling worthless and/or guilty
  5.  Increase or decrease in appetite or weight
  6.  Problems concentrating, remembering, and/or 
       making decisions
  7.  Trouble sleeping or sleeping too much
  8.  Headaches and/or stomach problems
  9.  Sexual problems 
10.  Thoughts of death or suicide

What are the takeaway thoughts? There are two. 

First, it is normal for a stroke survivor to experience most or all of these feelings or emotions. Second, family and friends should take heed and be more supportive of the survivor regardless of the healthy one's sometimes biased, small-minded, and me-centered thinking. 

A Stroke Survivor and an Uber Psychopath

My friend has a huge SUV, a BMW with a running board that, as a stroke survivor, on my very best day ever, I can't enter, to travel to and fro. So whenever she comes and I have an appointment, we take an Uber. Every Uber driver I met was pleasant, except one on that horrid day when I encountered a Uber psychopath. 

We were traveling to Adventist Hospital for a bi-weekly blood draw and everything was fine in the "to." But the "fro" was a different matter altogether.

When he stopped to pick us up at the hospital which was a 15 minute ride back to my apartment, my friend and I couldn't tell there was something wrong with him. He stopped, put the wheelchair in his trunk, and we were off. 

My friend asked him if he could possibly stop at  the pharmacy to pick up my prescription, and he agreed. At the pharmacy, once she got out of the car and entered the pharmacy, the questions started and I knew why he agreed to stop.

"Do you want to drive off and leave her here to make out later?" he chillingly said. "I know a place."

In the seconds that followed, I simply laughed, intentionally defusing those words as if he meant it as a joke. But his expression was dead-pan. 

He went on when I didn't answer him.

"We could drive far away from here or, if you'd rather, I could come in your apartment building to make sure you get safely to your apartment."

I laughed again to further defuse, but by now, his tone took on a more aggressive posture. I was on the brink of despair. I didn't look at him again, and I thought of opening the car door, but I didn't have my cane to walk away. It was in the trunk. I thought of getting out anyway and falling down (that was a given), but I might crack a rib or break my nose again or one of hundreds of other possibilities. How could I defend myself as a disabled person? I sat there with a smile on my face, but I felt chilled in the heat wave that was encompassing Portland, OR.

Fortunately, the pharmacy was not crowded and my friend came back out. He repeated the last question to her.

"I could come with you all to make sure you get safely to your apartment. Would you like me to park the car and do that?"

My friend, completely unaware of his thoughts leading up to that question, thanked him but said the building is a secure one so no need for him to bother. 

When we returned, he got the wheelchair and the cane out of his trunk. When he drove off, I told her what happened, and then she became horrified. We talked about calling the police, but then we decided to give him a "1" (you have to rate the Uber drivers) and not giving him a tip, all done by email shortly after the ride happens. We were going to call the police, but as time went on, I forgot the name of the driver and the encounter became less horrifying.

I've come to regret that decision, possibly allowing it to happen to other passengers, especially the disabled. I give myself virtual smacks on the head often. I also wonder if Uber vets the driver for mental health issues. I am an average-looking, 70 year old woman. If it could happen to me, being past the stage of "hotness," what about the others, younger and more attractive than me? 

I'm still wondering, with regret abounding forevermore.