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    • #21146
      Has anyone ever told you to be thankful that things aren’t worse after getting upsetting news? Have you ever felt pressured to be grateful, even during the toughest moments? These are examples of #toxicpositivity. Toxic positivity is a distorted belief that pervasive happiness is the key to wellness, and positivity the only acceptable emotion.
      Does this resonate with you? How has toxic-positivity impacted you? How have you coped? We invite you to join our #RealTalkRare challenge, chat with us and each other about this all-too common phenomenon.
      Join us in our challenge and share your experience with us! Jenn Powell shared some thoughts about toxic positivity in her latest column: https://bit.ly/2RNci3O
    • #21152

      I have SO much experience here – I am learning that I have been the recipient but also given platitudes. It feels so frustrating when someone glosses over with an “At least it is not worse”, or “I know how you feel.”

      Has anyone else struggled with this? Let me know – let’s get real! #realtalkrare

      Thanks,

      Jenn Powell

    • #21158
      Ed Tobias
      Keymaster

      Am I unusual? In my 40 years living with MS I can count the number of times on one hand that someone has told me “I know how you feel” or “my friend with MS is doing much better than you.” Toxic positivity hasn’t really been an issue for me. Has anyone else had my experience?

      Ed

    • #21162
      John Connor
      Keymaster

      I really can’t remember any.
      There were probably some when I worked with comics. But that would be extreme one liners for laughs! There were no boundaries. What happens backstage, stays backstage.

    • #21172
      Lola Dean
      Participant

      I’ve had MS for 13 years and all I hear is that I should be happy about this or grateful about that. Quite frankly, after so many doctors and let downs and “friends ” who really don’t want to know and just say “take care of yourself” or ” Call me when you feel better”. I’ve lost all friendships and am completely isolated except for going to doctors. No one gets it nor do they want to. I want a response other than “fine” when people ask how I am. It’s an automatic question for which an automatic response is requested but until I can come up with a real answer, I’d rather be alone. Even the MS Society pushes toxic positivity with smiling faces advertising toxic drugs  with happy little phrases. I much prefer MSAA. They tend not to be as condescending. Call me bitter, sad, whatever. Just don’t call me positive. There’s nothing positive about MS. I have lost every friend and family member because they don’t understand and when I try to explain, they tell me I’m whining.

      • #21173
        John Connor
        Keymaster

        Hi Lola
        I don’t know what to say – which is rare for me.
        It depends on where you live, of course, but their are usually MS support groups around. MS exercise classes also usually have a social side
        If none of your ‘friends’ or family are willing to understand other MS patients sure will.
        Best john

        • #21189
          Ed Tobias
          Keymaster

          Hi Lola,

          I’m so sorry you’ve had such a hard time of it. I have a couple of responses to “how are you doing?”. They include: “I’m slow but I usually get where I’m going” and “Holding my own.” I have to admit that I sometimes just say “Doin’ ok, thanks” and shuffle on.

          Ed

      • #21181

        Dear Lola,

        I wish I could hug you. Feeling unheard and unsupported is very tough and the isolation compounds those feelings.

        Many do not understand all we endure. To make themselves feel better they offer quick fixes or platitudes which can make us feel worse. You are heard here and validated in your pain. I do wish I could help with your isolation. When I was first diagnosed I was paired with a mentor who blew me off – that was pretty ironic. I soon found it was not because no one cared it was because the wrong person tried to. I attended another meeting among new people and felt heard. You have grieved so many losses and deserve nothing less.

        Navigating this disease is not easy. I sure hope you keep trying to connect, just as you did here. You are worth it, Lola. You added so much to our conversation with your honesty and in doing so helped others, including myself.

        Warmly

        Jenn

    • #21182
      Kevin Schaefer
      Keymaster

      Hey all, Jamie also wrote a great column on this subject. You can read it here.

      I really like this excerpt: “If you’re an MS patient, sometimes you just need to vent, to scream, cry, or talk about how awful, sad, frustrated, and furious you feel. Most people find it difficult to listen to all this passively. Instead, they want to tell you about their friend’s cousin’s daughter-in-law who is doing well with her MS or about the new herbal treatment they read of on Facebook. They’ll encourage you to smile and keep on the sunny side of life, and if you’re a Christian like I am, they’ll give you the stupidest piece of advice ever: Remember! God will never give you more than you can handle. (Seriously, have you read the Bible!? God does that all the time. That’s how people grow and spiritually mature!)”

    • #21239
      Kevin Schaefer
      Keymaster

      Hey everyone, this is an excellent column by Teresa Wright-Johnson on this subject.

      I especially like this excerpt: “In my life I’ve experienced much loss, adversity, and grief. I have been offered the nauseating, soul-stirring advice to which I am referring, the rationalizations of “at least you’re still here,” “be glad you can still walk,” “it could always be worse,” “they aren’t suffering anymore,” “God makes no mistakes,” and of course, “at least you don’t look sick.” Although there is an element of truth in each and every statement, the issue here is I am struggling. I don’t need a distraction, I need support. The freedom to just be, without judgment, taking the time I need.”

      Do you have any thoughts on this column?

    • #21240

      I enjoyed Teresa’s column as she captured how it feels to receive cliche’s. The support we so crave seems to evade and people are often at a loss. The assumptions made about our state-of-being are painfully untrue. It is okay to just be un-ok. Thank you Teresa #realtalkrare

      Jenn

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