We Declare a Moratorium on Toxic Positivity

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We Declare a Moratorium on Toxic Positivity

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We asked our contributors to provide their thoughts on toxic positivity and what can be done to combat the toxicity behind well-meaning and well-intentioned people who just want to help. Here are some ways that you can best support caregivers: 

Be specific with what you’re asking. 

“A pet peeve of mine is the question: What do you need? Or put another way: What can I do for you? 

Most people find it extremely hard to respond to that open-ended question. However well-meaning the inquiry, it makes many of us uncomfortable. We may be so busy attending to our loved ones, we may not know what we, personally, need. Or we may know but find it difficult to respond in an honest way. 

It is better for friends and family to ask specific questions such as: Would you like me to go shopping for you? May I bring you dinner? Would you like some company? Can I fill in for you so you can have a break? Specific questions provide an opening for an honest answer and the opportunity for needed help and support.”

- Bonnie Friedman, caregiver advocate and author of The Hospital Warrior

Many casual phrases can minimize the situation at hand. 

“I use toxic positivity and ableism interchangeably. I have some phrases that drive me crazy: 

  • Everything will be okay.
  • Don't cry, be strong.
  • It could be worse.
  • God only gives you what you can handle.
  • God only gives special kids to special parents.
  • You are a superhero.
  • You're so brave.

‘God only gives you what you can handle.’ There are many issues with this phrase. First, it assumes that the recipient of the message is of the same religious belief system. That aside though, it leaves many people perplexed. Why would God instill suffering on people? 

Would anyone consider saying this to a child who is battling cancer or any other life-limiting or illness or disability? Why would God put children to the test? Yet, many parents of children who are suffering will hear that phrase time and time again. 

Instead of lifting them up, it minimizes their struggles, hardship, and suffering and it further isolates them from the support they truly want to find in others. As well-meaning as it may be intended, it lacks empathy and is simply an ‘easy’ response for those who just do not know what to say. 

A good rule of thumb is to consider what your feelings and your responses would be to the phrases that you use. If you struggle with it, expect that anyone else will as well. 

Instead of feeling the need to lift a person up who is struggling, consider validating that what they are going through is tough and just BE there for them. Actions speak louder than words. Instead of words, offer a helping hand and space in your heart.

- Brenda Blais Nesbitt, the founder of Coaching for Caregivers Canada2020 Caregiving Visionary Award recipient and the host of Caring Conversations

Caregivers need the space to express negative feelings. 

“My pet peeve is when caregivers don’t allow themselves the luxury of acknowledging or feeling a negative thought … or when having those thoughts, not allowing yourself some grace about it (and spinning out into another negative space). I think it’s really important to express your frustration with the situation of caregiving, including resentments and irritations. 

The more we can let these out, the better able we are to get through it in one piece. Of course, each person must find their best (and most productive) way to express their frustrations—be it with a close friend or family member, an online support group, a professional therapist, a healthcare professional on the care team, etc.”

- Debbie Howard, creator of The Caregiving Journey

Sometimes you need to dig deeper when they tell you, “I’m fine.” 

“Yesterday I was chatting with an online friend - a mother who is lightyears ahead of me in wisdom and experience.  We were talking about coping with the stress of raising a child who is very medically complex.  My friend wrote ‘I've always felt like two people. The woman I present to the world ~ I'm fine, thanks. I've got it all together. And the woman I am ~ I'm falling apart inside, but I'm holding it together on the outside.’

This is the result of facing my worst fears and experiencing my worst fears as reality, during my entire adult lifetime. As I age, I find I am less inclined to pretend that I'm just fine, when a crisis occurs. My worst fears take the forefront these days, and I'm pretty aggressive about it.”

- Donna Thompson, creator of The Caregiver’s Living Room

Avoid “should-ing" all over a caregiver.

“'She’s in a better place' comes to mind as a phrase. Also, anything that starts with ‘You should really…’ without asking for advice. I hate when people ‘should’ all over me.

- Elizabeth Miller, Founder of Happy Healthy Caregiver.

The right thing to say today might not be the same phrase tomorrow. 

“I had someone tell me—honestly I believe she thought it would be helpful—that I only have to go through this once for each parent. 

‘It will take as long as it’s going to take’ and ‘it is what it is’ are two statements that cause the hair on my neck to rise when people are trying to assure me that I have no control over any of this, so why be anxious or upset? 

Depending on my emotional state, hearing, ‘Just stay in the moment and think about what you need to do today,” can be tremendously reassuring and keep me from getting overwhelmed by trying to arrange for every possible scenario for the next few months—or it can make me want to hang up the phone because planning ahead and lining up resources before I need them is how I feel calm knowing I will have what I need when I need it and not be last-minute scrambling.  

In general, the poor person trying to help me has to know my mental state in order to know what is right to say - which of course is not a reasonable thing to expect. This is also to say that supporting a caregiver can also be quite challenging!! The perfect thing to say one day can be the worst thing to say another day. Isn’t that fun for us all?! I compare it to living with a pregnant woman with hormonal mood swings and sudden cravings and morning sickness. You never know what you’re gonna get!”

- Fern Pessin, author of I'll Be Right There: A Guidebook for Adults Caring for Aging Parents 

A self-care routine—and the time to do it—is hard to come by. 

“You are asking the woman who frequently responded to ‘Have a great day!’ with ‘A great day? That’s too much pressure,’ long before she became a caregiver. That is, I find toxic positivity prevalent and troublesome in general. When directed at family caregivers, toxic positivity is at best, thoughtlessness, at its worst, it is harmful ignorance. 

Perhaps the toxic positivity directed at caregivers I find particularly frustrating is self-care shaming.  People say, ‘Well, don’t forget to take care of you.’ Or ‘What are you doing for self-care?’ Any caregiver knows some days we are lucky to get a few consecutive, deep breaths as self-care. We know self-care is important. 

Asking what we are doing for self-care or telling us we should take care of ourselves may feel positive and helpful to the speaker but only adds another layer of burden for the caregiver.”

- Jennifer O’Brien, author of The Hospice Doctor’s Widow

Families need to function as a unit, whether it is by blood or chosen family. 

“I was told a lot to ‘walk away’ or ‘you shouldn't be doing this,’ and ‘I know you didn't expect your life to be this way,” from people in my family. This is difficult to hear when caring for a loved one. I don't know if this helps but this is common.”

- Kandis Draw, a national cancer advocate and writer. 

Be a source of support and validation. 

“‘Everything will work out. It always does.’ ‘Keep your chin up.’ ‘It’s for the best.’ Perhaps well-meaning phrases, but ones that can leave us angry, confused, and resentful. They also keep us from expressing all of our emotions, including those that are deemed 'negative' or 'bad.' 

Emotions carry energy and have validity regardless of whether or not they make sense to someone else. Sometimes they don’t make sense to us, and we need to express them to find our way through them.

We’ve come through an era when positive thought was a panacea to our ills. However, when we diminish or brush off statements that don’t sound 'nice' or 'positive,' we contribute to feelings of guilt and shame. What is needed is support and validation.

When I work with caregivers, individually and in groups, I make it clear that they are free to say whatever they need to say. In group settings, we have ground rules for maintaining privacy and confidentiality. 

However, I’ve consistently observed that when one member takes a risk to share a 'negative' thought or emotion, heads nod in agreement, and the floodgates open. We acknowledge, support, and validate with the result that the caregiver feels heard and understood.

Toxic positivity has the unintended consequence of keeping caregivers from asking for help. It’s difficult to make requests when we feel we can or should keep going, even if it’s at the expense of our health and well-being. 

Caregiving situations that include addiction, mental health issues, or abuse are particularly at risk for maintaining secrecy and isolation. Active listening and non-judgment in questioning create openings for identifying where we can begin to shift problems into solutions.”

- Kathy Koenig, a certified caregiving consultant and founder of The Caregiver Connection

The pandemic was overwhelming—especially for caregivers. 

  • 'You're so strong to handle all that.' 
  • ‘You're doing great.’

“This is SUCH a great topic. I've talked about this in mom groups as well, especially during the pandemic when everyone was so overwhelmed, and it just didn't help to hear things like this.”

- Kimberly Whiter, CEO and co-founder of Elder Care Solutions

Caregivers don’t always have the time to take care of themselves. 

“As a dementia family caregiver, the phrase I hear frequently—that chaps my hide like no other—is something along the lines of, ‘Don’t forget to give yourself permission for self-care!’ Every time I hear it I fantasize about sharpening the end of that sentence and ramming it right back down their throats. 

As caregivers we already know if we aren’t healthy we can’t do our jobs, we already know if we aren’t rested we can’t be our best for our loved ones, we already know if we can’t get our needs fulfilled we’re handicapping ourselves of any chance to successfully fulfill the needs of our dementia people. We’re not stupid, we’re EXHAUSTED!”

- Lickety Glitz, author of Stumped Town Dementia and an upcoming companion documentary: Wine, Women, and Dementia

Your mindset sets up the foundation for your day. 

“As someone who actually believes that everything happens for a reason, the difference - I believe - is that I don't say that to other people. I believe in it for my own journey. Part of my own healing journey has accepted that all emotions are good as they teach us something. For me, mindset is everything! 

That being said, there are phrases that do trigger me, and NOW I have the self-awareness to know that I'm the only one responsible for how I react to someone else's word—whether they were 'stupid' or not.”

- Nicole Dauz, leading SelfCare4Caregivers

Be an active and empathetic listener. 

“While people say certain things with the best intentions, it may highlight that they are unaware of what caregivers go through and the help they actually need. They need to be seen and heard. I have a bunch:

  • I can't tell you how many times certain religious family members told me this: ‘God doesn't give you anything you can't handle.’ There is so much tied up in that. Does that mean that, because I am strong, I have been selected to have someone I love suffer? Does that mean that I can't expect help because it is a test? 
  • ‘It will get better.’ Really? How does someone know? Do they know what better would look like for me (me the caregiver)? ‘I am sure there will be a light at the end of the tunnel,’ is a similar example that comes to mind.  
  • Any phrase that begins with, ‘At least you have….’ I remember working with a client who had friends who said, "Well at least you have a large family to help, I would be all alone if anything like this happened to me.” Another client voiced something similar that bothered her: ‘At least you have a big enough house for all the equipment your mother needs.”
  • ‘This will make you stronger.’
  • ‘Look on the bright side, he or she is not in pain or he or she is not aware or.....’
  • ‘You are a saint.’"

Robert Pardi, speaker and certified lifestyle coach.

There isn’t always a reason. 

“My mother used to always say to me, ‘Everything happens for a reason,’ and most of my life I believed that. Then, after the death of my father and older brother within a week and having to move my mother to be near me in VA and 6.5 years of caring for her, I quit believing that cliché! I just think things happen; you have some control over how you respond and take care of yourself, but there is not always a ‘reason.’ 

We have heard a lot of this in the last year: ‘It is what it is.’ I hate that one. It seems so passive when again, you have choices; you can take back some control and make decisions. It just strikes me as a statement of giving up to the situation.

Also, as a former caregiver, I was always told, ‘You have to take care of yourself.’ Well, DUH! But that is one of the hardest things for a caregiver. Is there family support? Who can help? How do you get a break?

Another one I heard frequently was, ‘You’re so lucky to have your Mom!’ How does anyone know that? It is frequently followed by, ‘My Mom died at a younger age, and I miss her so much.’

These are all insensitive statements that people make when they don’t know what else to say, and they only serve to take away from the caregiver’s need to be heard.”

- Robin Weeks, a certified caregiving consultant as well as the owner at My Pivotal Point

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