A damaged brain can be difficult for recovery, and regrettably, well-intentioned but tactless family and friends sometimes unintentionally interfere with your recovery or worsen problems. Recovery is hard enough without feeling like the people closest to you are making it harder. Here is some common way this happens:
It was 2 weeks later after I had my stroke while in acute rehabilitation for four months when I received a surprising visit from my friend’s mother. She was looking was spiffy and fashionable though the price tag of $350 down her back was behind her unknowingly. “Lydia” looked around for the most comfortable chair to fit her full-figured body and found it.
“I don’t like to see you looking like that–no makeup and ordinary,” she said. “Doesn’t this place have a salon?”
Three responses immediately crossed my mind more or less simultaneously though I couldn’t respond to her because I couldn’t talk from a subarachnoid hemorrhage stroke: 1) “There’s something more important than a salon–maybe my stroke?”, 2) How did you get to be so shallow, and 3) “Go to hell!”
Unfortunately, family and friends—while often well-meaning—can unintentionally make brain injury worse to recover from, and incredibly exhausting and isolating when everyone around you is making things harder. It can feel overwhelming and nowhere to turn to for the support you so seriously need.
Rather, here’s a list of what you should avoid:
Moving You Forward Way Too Aggressively
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Ignoring your energy limits which can lead to fatigue and emotional distress
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Bringing too many visitors at once
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Talking too loudly or too much when all you need is quiet to feel relaxed
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Having various conversations at once
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Playing music or TV too loudly
Making You Feel Like an Unnecessary Onus (Burden)
- Pressuring you to return to work, driving, or activities prematurely
- Not respecting your need for rest and sleep
- Making passive-aggressive comments like, “I imagine you’ll do nothing once more.”
- Complaining about caregiving
- Hurting motivation and mental health, both crucial for recovery
- Encouraging you to get back to the same way you were before your accident
Dismissing or minimizing the effects
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Making less of what happened to you leads to shame
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Extending yourself past your barriers
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Can undermine your understanding
- Encouraging you to “get back to normal” too soon
- Not understanding the need for rest and breaks
Talking For You
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Interrupting you
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Answering for you
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Finishing your sentences
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The loss of fortitude and self-determination
Being Impatient or Frustrated
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Rolling their eyes or getting annoyed when you forget things or move slowly
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Increase in anxiety, helplessness, or withdrawal
Arguing or Creating Stress
- Getting frustrated when you can’t do things you used to do
- Emotional stress makes symptoms worse–especially memory, focus, and irritability
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High-conflict environments can worsen recovery outcomes
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Being impatient with memory problems or slower processing
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Arguing about your limitations
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Making decisions without involving you when you’re within hearing distance
Disregarding Your Routines
- Not following medical mandates frequently
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Ignoring your task list or moving your items unbeknownst to you
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Not maintaining consistent schedules that help with cognitive recovery
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Often changing plans or surroundings
Not Respecting Boundaries
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Talking too much, too loud, or too long
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Pushing you into overstimulating environments
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Trigger your feelings of stress of confusion
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Limiting visits when you’re not up for them
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Not creating quiet spaces where you can retreat when overwhelmed
Forcing Conversations About the Past or “Old You”
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Bringing up the past and asking will you be back to normal soon
- Talking to others as is you’re not in the room
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Creating grief and pressure instead of focusing on your progress now
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Disrespecting your voice, beliefs, or adult outcomes
Things You Need:
- Patience and listening
- Giving you time to think or respond
- Letting you guide your recovery goals
- Creating a calm, predictable environment
- Supporting your mental health without judgment
- Celebrating small wins without comparison to the past
- Connect with others who understand like:
- Brain injury support groups (online or in-person) can provide validation
- Other survivors understand in ways that even loving family often can’t
Remember, this situation isn’t your fault, and your feelings about it are completely valid. When family and friends understand brain injury better, they can become strong forces in your recovery. Consider them attending appointments for your care so they can learn directly from your healthcare providers.
It’s unfortunately common for people with brain injuries to feel this way. Your family and friends likely care deeply but don’t understand what you’re going through or how to help. Brain injury can be invisible, so they may not get how it affects your daily living.
As Anonymous, somebody somewhere, once said, “There are people who bring you energy, and people who drain it. Choose wisely.”
Never were wiser words spoken.
Joyce:
Sometimes people will speak without first thinking about the implications their words may have. Friends or family, it doesn’t matter. They may even think that their statements are encouraging and supportive. As I went through my recovery, I came to the realization that most people do not know how to act around or respond to a stroke or TBI survivor. This many times leads to these people putting distance between themselves and the survivor. I lost a few friends immediately following my TBI. It took a few years before we reconnected.
As I work with other survivors and listen to how others, both friends and family members, may interact with them, I sometimes have to call them aside and explain how their words may not be supportive to the survivor.
We do not want sympathy, we want understanding, and to be given the time to respond or react.
Sometimes as a survivor, we will need to learn how to deal with these situations. After returning to work, the president of the company proposed a new pay plan for me which was definitely not in my favor. It had a lot of moving parts and he wanted an immediate response. My response was that he had just presented a compensation plan with a lot of variables and that, as was my always my style, I would need time to review his proposal and I would respond the following day. He persisted, and I basically told him that if he needed an immediate response, it was “no”. He gave me some additional time. When we met the next day, I turned down the original proposal and made a counter-offer, which he agreed to.
Joyce, you sent at the just the right time, I was having trouble from another’s reactions, appreciate the help and ability to see it more clearly, getting boundaries clear again, thanks! kd