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.
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.
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.
Very educational article! Thank you very much!Well done
ReplyDeletevaluable information ~ thank you for sharing.
ReplyDeleteGreat article!
ReplyDeleteTo the two unknowns: share your name next time, even if it's a pen name or a pseudonym. It's difficult to address you, but thanks for the comments. Much appreciated.
ReplyDeleteRichard, my intent is to educate. Thank you for your comment!
ReplyDeletevery good information and spot on as im sure we have all felt these as survivors including myself. the normalcy feeling has gotten much better 10 years out and a key in recovery is acceptence to your new life. for me personally that was the hardest part of recovering.
ReplyDeleteMatt, almost 10 years out, too, and I still don’t “accept” the stroke. My stroke was caused by a deficiency in Protein S, a genetic disorder, aka bad genes. It set me on a destructive path, i.e. thoughts of suicide and depression, which I got under control 2 years post-stroke. Thanks for sharing.
ReplyDeleteGreat article. It really explains what we experience. I was Fire Chief of our local volunteer department when I had my stroke. I tried to come back to soon and was treated like I had leprosy.
ReplyDeleteI stepped down as Chief and was almost immediately kicked out of the department. I shouldn’t, but to this day I absolutely hate everyone associated with that department.
You really find out who your true friends are.,,
I am three plus years out from my stroke and I still struggle with many of the feelings which you mentioned in your article such as feelings of anxiety, worthlessness, problems concentrating, increased forgetfulness, sleeping too much and the list goes on. Not as many issues as before but still too many for my liking. A couple of things have really helped me in my journey; my extremely supportive spouse and my understanding mates. My motto to date has been, “one step at a time, one day at a time.” I really do want the “Me” back that I was and I’m working towards achieving it but by gawd it seems to be moving at glacial speed sometimes. Thanks for the article and I am enjoying your Blog. BTW I’ve just purchased your book. I’m sure that it will be everything that I expect.
ReplyDeleteVery well done!
ReplyDeleteWithout a supportive spouse, your position in society is guaranteed to be rejection. If your spouse treats you with disrespect and as someone stupid and irresponsible, then all your common friends will follow his lead, as he should know what you are like.
ReplyDeleteI often have thought, if my ex had remained "proud" of me, and treated me with great respect and affection in front of his friends and family, then I might have been accepted, and been less likely to become aggressive when I was treated negatively, and thereby have been able to still fit into the social groups that we had. Groups where, now HE is the only member.
You speak the truth, Maree!
ReplyDelete